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Significant rise in ADHD diagnoses in the UK

17 July 2023

Both ADHD diagnoses and prescriptions for ADHD medication have increased significantly over the past two decades, except in children under five, finds a new study by UCL researchers.

The research, published in BJPsych Open, reviewed data from 7 million individuals aged three to 99, from IQVIA Medical Research Data, a UK primary care database, between 2000 and 2018.

Of these individuals, 35,877 had an ADHD diagnosis and 18,518 received prescriptions for ADHD medication from their GP.

Although the number of individuals receiving medication for ADHD is still relatively low, the researchers found that ADHD was more commonly diagnosed in children than in adults, and was more common in boys and men than girls and women.

The findings showed that, in absolute terms, the increase was highest in children: amongst boys aged 10-16 years, 1.4% had an ADHD diagnosis and 0.6% had been prescribed ADHD medication in 2000, rising to 3.5% and 2.4% respectively in 2018.

But the relative increase was largest among adults. For example, over that time, there was approximately a twenty-fold increase in ADHD diagnoses and nearly fifty-fold in ADHD prescriptions in men between the ages of 18-29 (from 0.01% to 0.56%) .

However, there was no significant increase in children under five.

Lead author, Dr Doug McKechnie (UCL Institute of Epidemiology & Health Care), said: “ADHD diagnoses and prescriptions for ADHD medication by a GP have become more common over time.

“Whilst ADHD is most likely to be diagnosed in childhood, an increasing number of people are diagnosed for the first time in adulthood. We do not know exactly why this is happening, but it may be that ADHD has become better recognised and diagnosed.

“Over the last few years, there have been many reports of long waiting lists for ADHD assessments on the NHS, especially in adults. It’s likely that more and more people will be diagnosed with, and treated for, ADHD, so specialist services need to be made available to handle this.”

Symptoms of ADHD include impulsiveness, disorganisation, poor time management skills, difficulty focusing and restlessness. ADHD symptoms start in childhood, but are increasingly recognised to persist in adults.

The number of ADHD diagnoses were about two times higher in the most deprived areas amongst both children and adults, when compared to the least deprived areas.

Dr McKechnie added: “Many people are accessing private care for ADHD. This may create healthcare inequalities given that ADHD is more common in deprived areas. People living in deprived areas may not be able to afford private healthcare, and may suffer with undiagnosed and untreated symptoms of ADHD for longer. If people in deprived areas are struggling to get diagnosed with ADHD, our results may actually under-estimate how many people there have it, as we only counted diagnosed ADHD.”

The research also highlights how ADHD medication is now being more frequently prescribed.

In the NHS, such prescriptions start with a referral from a specialist before being handed over to GPs.

The researchers are calling for GPs to have better support in prescribing and monitoring these medications.

Dr McKechnie said: “There are already many demands on GPs’ time. We need to ensure we have the right frameworks in place to support them as rates and awareness of ADHD increase - allowing patients to receive prompt, safe and effective care.”

Dr Peter Carpenter, Chair of the Royal College of Psychiatrists’ Neurodevelopmental Special Interest Group , said: “People with ADHD can struggle with significant disruption to their personal and professional lives if the condition is left untreated. It’s good to see public awareness of the disorder has grown and that more people are coming forward for a diagnostic assessment and treatment.

“ Once someone has a diagnosis, they usually benefit from adjustments at work or in other areas of their daily lives.  Medication can help treat symptoms of inattention, hyperactivity and impulsivity, particularly in those who have a moderate to severe expression of ADHD.  Talking therapies and peer support groups can also be beneficial.

“NHS mental health and primary care services must be provided with the necessary resources to meet this unprecedented rise in demand for support. Only with proper funding will they be able to effectively manage growing waiting lists for assessments and provide  timely and high-quality post-diagnostic care to those who need it.” 

Dr McKechnie is supported by funding from the National Institute of Health and Care Research (NIHR).

Study limitations

The study only captured ADHD medication prescriptions in NHS primary care and not secondary care, which will under-estimate the overall incidence and prevalence of medication usage.

The study period finished in 2018 and since then, various events, including the Covid-19 pandemic, have had a substantial impact upon mental health services. It is therefore likely that the incidence and prevalence of ADHD in the UK has continued to change between the end of the study and the present date.

• Research in  BJPsych Open
• Dr Doug McKechnie's academic profile
• UCL Institute of Epidemiology & Health
• UCL Population Health Sciences
• Credit:  David Benedict  on iStock

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Significant rise in ADHD diagnoses in the UK

Published: 18 July 2023

The diagnoses and prescriptions for attention deficit hyperactivity disorder (ADHD) medication have increased significantly, according to a new study funded by NIHR.

The research reviewed 7 million individuals aged three to 99 between 2000 and 2018. It used data from the IQVIA Medical Research Data, a UK primary care database.

Researchers from University College London (UCL) found:

• 35,877 had an ADHD diagnosis
• 18,518 received prescriptions for ADHD medication
• a 20-fold increase in ADHD diagnoses
• a 50-fold increase in ADHD prescriptions in men aged 18-29 (from 0.01% to 0.56%)
• ADHD diagnoses were about two times higher in the most deprived areas

Findings revealed that ADHD was more commonly diagnosed in children, boys and men. However, the relative increase was largest among adults.

Amongst boys aged 10-16, 1.4% had an ADHD diagnosis and 0.6% had been prescribed ADHD medication in 2000. This had risen to 3.5% and 2.4% respectively in 2018. There was no significant increase in children under five.

Adults diagnosed with ADHD increasing

ADHD symptoms start in childhood, but are increasingly recognised in adults. Symptoms of ADHD include:

• impulsiveness
• disorganisation
• poor time management skills
• difficulty focusing
• restlessness

Lead author, Dr Doug McKechnie, UCL Institute of Epidemiology and Health Care, who is funded by an NIHR In-Practice Fellowship , said: “ADHD diagnoses and prescriptions for ADHD medication by a GP have become more common over time.

“Whilst ADHD is most likely to be diagnosed in childhood, an increasing number of people are diagnosed for the first time in adulthood. We do not know exactly why this is happening, but it may be that ADHD has become better recognised and diagnosed.”

The research highlighted how ADHD medication is more frequently prescribed. In the NHS, prescriptions start with a referral from a specialist before being handed over to GPs.

Researchers say GPs need to have better support in prescribing and monitoring these medications.

Study limitations

The study only captured ADHD medication prescriptions in NHS primary care and not secondary care. Researchers say this will under-estimate the overall incidence and prevalence of medication usage.

The study period also finished in 2018. Since then, various events, including the Covid-19 pandemic, have had a substantial impact upon mental health services. It is therefore likely that the incidence and prevalence of ADHD in the UK has continued to change between the end of the study and the present date.

Find out more about this research.

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ATTENS Project

The ATTENS (ADHD trial of external trigeminal nerve stimulation) project is investigating a novel non-medical treatment for ADHD in children aged 8 to 18 years old. The treatment consists of a device that stimulates the trigeminal nerve with a small electrical current through a battery charged patch that is put on the child’s forehead when they sleep. The activation of the trigeminal nerve on the forehead leads to the activation of the brain stem and frontal brain regions that are important for arousal and attention. The Monarch eTNS (external trigeminal nerve stimulation) device is approved by the USA Food and Drug administration (FDA) in the U.S.A as the first non-pharmacological treatment for ADHD. The study will test in a large multicentre trial across London and Southampton whether using this device for 4 weeks will improve ADHD behaviours, cognitive skills like attention and self-control and the function of the brain using functional magnetic resonance imaging (fMRI). The study will randomise participants to either the real or the sham device which is like a placebo. All participants will be assessed before and after the treatment as well as 6 months later in a series of clinical and cognitive measures, safety measures, measures of motion in a wrist-hand device and will also do fMRI if they want but this is optional.

Project Team

This project is led by Professor Katya Rubia in collaboration with Professor Samuele Cortese, University of Southampton and takes place in London and in Southampton.

Chief Investigator: Professor Katya Rubia, King's College London [email protected] Co-Investigators: Dr Ben Carter, King's College London  Professor Paramala Santosh, King's College London Professor Mitul Metha, King's College London Clinical Trial Manager: Lena Johansson, King's College London [email protected] External Co-Investigators: Professor Samuele Cortese, Centre for Innovation in Mental Health (CIMH), School of Psychology, University of Southampton Andrea Bilbow OBE, Chief Executive of ADDIS

The project is funded by National Institute for Health Research (NIHR130077). Trial registration ISRCTN82129325.  Recruitment period: Depending on approval, it is expected that recruitment will start in September 2022 and last until the beginning of 2025.

Principal Investigator

Professor Katya Rubia

Professor of Cognitive Neuroscience

Affiliations

• Institute of Psychiatry, Psychology & Neuroscience
• School of Academic Psychiatry
• Department of Child & Adolescent Psychiatry

For further information regarding the project, please contact:

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• Volume 21, Issue 4
• Twenty years of research on attention-deficit/hyperactivity disorder (ADHD): looking back, looking forward
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• Samuele Cortese 1 , 2 , 3 , 4 , 5 ,
• David Coghill 6 , 7 , 8
• 1 Academic Unit of Psychology, Center for Innovation in Mental Health , University of Southampton , Southampton , UK
• 2 Clinical and Experimental Sciences (CNS and Psychiatry), Faculty of Medicine , University of Southampton , Southampton , UK
• 3 Solent NHS Trust , Southampton , UK
• 4 New York University Child Study Center , New York City , New York , USA
• 5 Division of Psychiatry and Applied Psychology, School of Medicine , University of Nottingham , Nottingham , UK
• 6 Departments of Paediatrics and Psychiatry, Faculty of Medicine, Dentistry and Health Sciences , University of Melbourne , Melbourne , Victoria , Australia
• 7 Murdoch Children’s Research Institute , Melbourne , Victoria , Australia
• 8 Royal Children’s Hospital , Melbourne , Victoria , Australia
• Correspondence to Dr Samuele Cortese, Academic Unit of Psychology and Clinical and Experimental Sciences (CNS and Psychiatry), University of Southampton, Southampton SO17 1BJ, UK; samuele.cortese{at}gmail.com

In this clinical review we summarise what in our view have been some the most important advances in the past two decades, in terms of diagnostic definition, epidemiology, genetics and environmental causes, neuroimaging/cognition and treatment of attention-deficit/hyperactivity disorder (ADHD), including: (1) the most recent changes to the diagnostic criteria in the Diagnostic and Statistical Manual of Mental Disorders and International Classification of Diseases; (2) meta-analytic evidence showing that, after accounting for diagnostic methods, the rates of ADHD are fairly consistent across Western countries; (3) the recent finding of the first genome-wide significant risk loci for ADHD; (4) the paradigm shift in the pathophysiological conceptualisation of ADHD from alterations in individual brain regions to a complex dysfunction in brain networks; (5) evidence supporting the short-term efficacy of ADHD pharmacological treatments, with a different profile of efficacy and tolerability in children/adolescents versus adults; (6) a series of meta-analyses showing that, while non-pharmacological treatment may not be effective to target ADHD core symptoms, some of them effectively address ADHD-related impairments (such as oppositional behaviours for parent training and working memory deficits for cognitive training). We also discuss key priorities for future research in each of these areas of investigation. Overall, while many research questions have been answered, many others need to be addressed. Strengthening multidisciplinary collaborations, relying on large data sets in the spirit of Open Science and supporting research in less advantaged countries will be key to face the challenges ahead.

https://doi.org/10.1136/ebmental-2018-300050

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Introduction

Attention-deficit/hyperactivity disorder (ADHD) is the most common neurodevelopmental disorder in children, with an estimated worldwide prevalence around 5%. 1 Although it has for a long time been considered a childhood disorder, it is now established that impairing ADHD symptoms persist in adulthood in a sizeable portion of cases (around 65%), 2 although there is variability in the estimate due to methodological heterogeneity across studies. 3

As for other mental health conditions there has, over the past two decades, been an increasing body of research on ADHD. Reasons for this increase include: increased recognition of the impact of ADHD on functioning; advances in research methodology and technology; and interest from pharmaceutical companies.

Here, we provide an overview of what we deem have been some the most important advances, in the past two decades, in ADHD research. We also discuss key areas for future research.

Given the large body of literature and space constraints, this review is selective rather than systematic and comprehensive. We relied mostly on meta-analyses, retrieved with a search in PubMed using the following syntax/terms (update: 8 August 2018): (ADHD OR Attention Deficit OR Hyperkinetic Disorder) AND (meta-analy* OR metaanaly).

Presentation

Diagnostic definition.

The Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5), 4 published in 2013, introduced several significant changes in relation to the DSM Fourth Edition Text Revision (DSM-IV-TR) 5 criteria. First, the threshold in the number of symptoms (criterion A) necessary for the diagnosis in older adolescents and adults was reduced from 6 to 5. This change is in keeping with the notion that, despite a reduction in the number of symptoms over development, adults with ADHD in childhood can still present with impairment. 2 The required age of onset was increased from ‘prior to 7’ to ‘prior to 12’. The purpose of these changes was well intended and designed to facilitate the diagnostic process in adults, who often have trouble pinpointing the exact age of onset, especially if early in the development. Unfortunately, neither change was based on empirical evidence, and methods used for diagnostic ascertainment in adults are still under debate. 3 Another pivotal change in DSM-5 is the removal of the veto around the dual diagnosis of ADHD and autism spectrum disorders (ASD) that was present in previous editions of the DSM. Unlike the age of onset and symptom number changes this change is supported by a significant body of research (see ref  6 ). Finally, the (sub)types of ADHD defined in the DSM-IV-(TR) were replaced by the notion of different presentations. This acknowledges the instability in the phenotypic manifestation of inattention or hyperactive/impulsive symptoms over time, 7 in contrast to the more static notion of a subtype.

With regard to the International Classification of Diseases (ICD), it appears that the veto to diagnose ASD in the presence of ADHD will be retained in the upcoming ICD 11th Revision ( https://icd.who.int/browse11/l-m/en#/http%3a%2f%2fid.who.int%2ficd%2fentity%2f821852937 ).

Overall, while these changes to a degree reflect recent empirical evidence and/or practical needs in the diagnostic process, there are still issues that need to be addressed. First, current criteria still focus on the number of symptoms rather than on a more precise definition of functional impairment. This should be a priority for the field and efforts, such as the development of the International Classification of Functioning, Disability and Health: Child and Youth version, are already ongoing. 8 Second, while currently each of the symptoms listed in the DSM criterion A carries the same weight, it has been argued that inattention should be more heavily weighted than hyperactivity/impulsivity. 9 Supporting evidence, which comes from clinical samples, needs to be replicated in population-based studies. Third, from a practical standpoint, it is unclear on how to best integrate different information sources (eg, parents, teachers, etc). Addressing this challenge is pivotal. Fourth, although proposed as a separate type of ADHD or even a separate diagnostic entity, the extent to which the construct of sluggish cognitive tempo (impairment of attention in hypoactive-appearing individuals) overlaps with ADHD inattentive presentation remains still unclear. 10 11 Finally, one of the most controversial topics in the entire field of ADHD research is currently around the possibility that ADHD can emerge de novo in adulthood, in contrast to its conceptualisation as a neurodevelopmental disorder. Despite an increasing number of important studies, the controversy is far from being solved 12 and we expect it will be a major focus of research in the field in coming years.

We also expect that proposed radical, although controversial, changes in the nosographic approach to mental health conditions, such as the Research Domain Criteria will significantly influence future research on ADHD. 13

Epidemiology

One of the most controversial questions in relation to the epidemiology of ADHD has been around possible differences in the prevalence of the disorder in different countries. In particular, the differential rates of clinical diagnosis in North America and Europe are cited by detractors of ADHD, as supporting the notion that ADHD is not a ‘real’ disorder but rather a social construct. 14 However, a meta-analysis published in 2007 1 found that diagnostic criteria, source of information, requirement of impairment for diagnosis and geographic origin of the studies significantly impacted on the estimated pooled rate of ADHD (5.29%). A significant difference in prevalence emerged only between North America and both Africa and the Middle East, although evidence from non-Western countries was limited. However, as there were only a limited number of studies available for Africa and Middle East, these findings should be considered with caution. By contrast, no significant differences emerged between Europe and North America, suggesting that when using the same diagnostic approach the rates of the disorder are fairly consistent in Western countries, with variability in the prevalence accounted for primarily by methods used to diagnose ADHD. Another more recent meta-analysis 15 found no evidence to support an increase in the epidemiological prevalence of ADHD over the past three decades when standardised diagnostic procedures are followed. This implies that the trend for increased rates of diagnosis 16 are not accounted for by actual increases in prevalence. Rather, the mismatch between administrative and epidemiological rates of the disorder, which varies between the USA and Europe, is likely accounted for by cultural and social factors. 16

As the bulk of the available epidemiological studies focus on school-age children from North America and Europe, further population-based studies from other continents as well as in preschoolers and adults should be encouraged. Additionally, longitudinal epidemiological studies aimed at better understanding the developmental trajectories and predictors of remission/persistence of ADHD in adulthood will be instrumental, alongside other clinical, neuropsychological, genetic and neuroimaging studies, to inform prevention programmes. Development of a standardised definition of caseness and remission will be pivotal for this body of research to be fruitful.

Genetics and environmental causes of ADHD

Studies of twins and adopted children indicate a high heritability for ADHD (60%–90%). 17 Efforts to find the genes underpinning this heritability have been more challenging than initially anticipated. As for other mental health conditions, it became clear that ADHD aetiology is accounted for by a complex interaction of many genes each with a relatively small effect and by gene × environment interactions. 18

The first approach to finding the genes involved in ADHD was the ‘candidate gene’ approach. This approach focuses on identifying the variants in genes coding for proteins hypothesised, a priori, to be involved in the pathophysiology of ADHD. These studies identified only about 10 genes as having significant support, 19 which together accounted for only a small fraction of the total ADHD heritability. The next major approach, ‘genome-wide association studies’ (GWAS), which allows the analysis of a large number of common (ie, present at greater than 5% frequency in the population) single-nucleotide polymorphisms across the entire genome, was initially unsuccessful in ADHD, as the available sample was too small to show a meaningful effect. However, in a major breakthrough, the first 12 independent loci have been recently identified through GWAS. 20 Associations were enriched in loss-of-function intolerant genes and brain-expressed regulatory marks, paving the way for a number of novel lines of investigation on the neurobiology of ADHD.

A further recently developed approach focuses on rare (ie, a frequency in the general population below 1%) ‘copy number variants’ (CNV). These are defined as replications or deletions of the DNA with a length of at least 1 kb. CNVs over-represented in ADHD have been detected, but their contribution can so far only explain 0.2% of ADHD heritability. 21

As for environmental aetiological factors, there have been, over the past years, considerable data suggesting that prenatal and postnatal factors, such as maternal smoking and alcohol use, low birth weight, premature birth and exposure to environmental toxins, such as organophosphate pesticides, polychlorinated biphenyls and zinc, are associated with increased risk for ADHD. 17 22 However, except for preterm birth, genetics studies have implicated unmeasured familial confounding factors, which are not in line with a causal role of environmental factors. 23

Severe maternal deprivation has also been related to the development of ADHD-like symptoms. 24

The study of the causes of ADHD still has many unanswered questions. We need a better understanding of how genes interact with each other, and of the interplay between environmental factors and genes. Genetics has the potential to offer many other exciting future avenues of research in ADHD. We will only mention briefly here: (1) the use of induced pluripotent stem cell derived from peripheral tissue of patients with ADHD and used to generate brain cells with the aim to model brain circuits and responses to medications or other stressors; (2) the use of zebrafish and fruit fly models to augment currently available animal models of ADHD.

Neuroimaging and neurocognition

Initial pathophysiological models of ADHD published 20 years ago 25 were based on dysfunctions in a limited number of brain areas, namely the frontal cortex and the basal ganglia. Over the past two decades, and similar to other mental health conditions, a major paradigm shift from alterations in individual brain regions to dysfunction in brain networks has begun to reshape our understanding of the pathophysiology of ADHD. Structurally, meta-analyses and mega-analyses of the structural MRI studies conducted over the past two decades pointed to consistently replicated alterations in the basal ganglia, 26 and in a number of other subcortical areas. 27 Functionally, a comprehensive meta-analysis 28 found that the majority of the ADHD-related hypoactivated areas were related to the ventral attention and the frontoparietal networks. By contrast, the majority of ADHD-related hyperactivated areas fell within the default mode network and other hyperactivated areas were within the visual network. This is in line with the hypothesis that the attentional lapses that characterise ADHD result from an inappropriate intrusion of the default network in the activity of task-positive networks frontoparietal, ventral or dorsal attention networks, 28 according to the default network hypothesis of ADHD , 29 which has been arguably one of the most inspiring proposals in the neuroscience of ADHD over the past two decades.

While we have gained insight into the brain networks that are dysfunctional in ADHD and in the delay in cortical maturation, 30 we look forward to the next generation of neuroimaging studies which we hope will start to translate these findings into the clinical practice. The introduction of machine learning approaches, such as support vector machine, has been welcomed in the field of clinical neuroscience as a way to translate neuroscientific findings at the individual patient level, thus overcoming the main limitation of current studies that can only provide results valid at the group, rather than individual, level. 31 An increasing number of studies have used machine learning based on MRI data to validate the diagnosis of ADHD with varying degrees of success. 32 33

Neurocognitive studies have made a considerable contribution to our understanding of ADHD. In recent years, the field has moved away from linear single-cause models of ADHD towards multipathway models that emphasise the heterogeneity inherent to ADHD and provide a link between individual differences at the brain level and clinical presentation. 34 35

We believe that an interesting line of research for the future will be to combine genetics, clinical, neurocognitive and neuroimaging data to define, via machine learning approaches, response to treatment, tolerability profiles and functional trajectory of the disorder over time. This will be a crucial step towards personalised and precision approaches to treatment.

Over the past two decades, there has been a marked increase in the number of randomised controlled trials (RCT) aimed at testing the short-term efficacy and tolerability of pharmacological treatments for ADHD (both stimulant and non-stimulant medications). Most have been sponsored by Big Pharma and were designed to support the licence of the medication. In parallel, due to concerns around possible side effects of medications and lack of clarity around their long-term effects, several lines of research on non-pharmacological interventions have been developed. Recent important methodologically sound meta-analyses allow us to summarise and critically discuss this large body of evidence.

For the pharmacological interventions, a comprehensive network meta-analysis 36 of 133 double-blind RCTs demonstrated high to moderate effect sizes (in terms of efficacy) for the different medications versus placebo. Standardised mean differences (SMD) ranged from −1.02 (95% CI −1.19 to −0.85) for amphetamines to −0.56 (95% CI −0.66 to −0.45) for atomoxetine (methylphenidate: −0.78, 95% CI −0.93 to −0.62). In children/adolescents, methylphenidate was the only drug with better acceptability than placebo; in adults this was the case only for amphetamines (with no difference between placebo and other active drugs). Taking into account both efficacy and safety, evidence from this meta-analysis supported methylphenidate as preferred first-choice medication for the short-term treatment of ADHD in children/adolescents and amphetamines for adults.

As for non-pharmacological options, a comprehensive synthesis on non-pharmacological treatments for children and adolescents with ADHD has been provided in a series of meta-analyses by the European ADHD Guidelines Group (EAGG). In 2013, they published a first systematic review/meta-analysis 37 addressing the efficacy of behavioural interventions, diet interventions (restricted elimination diets, artificial food colour exclusions and free fatty acid supplementation), cognitive training and neurofeedback on ADHD core symptoms (ie, inattention, hyperactivity and impulsivity). The systematic review included only RCTs and considered two contrasting outcomes: those rated by individuals not blinded to the treatment condition (active vs control) and those rated by individuals who were probably blinded to treatment (eg, teachers in trials assessing a behavioural intervention implemented with parents). The results were strikingly different depending on the type rater. When considering not blinded ratings, all interventions resulted significantly more efficacious than the control condition in terms of reduction of ADHD core symptoms. However, when considering the more rigorous probably blinded ratings, only free fatty acid supplementation and artificial food colour exclusion remained significantly more efficacious than the control conditions, with small effect sizes (SMD=0.16 and 0.42, respectively), indicating that the clinical impact of these treatments on ADHD core symptoms is, at the group level, modest.

Subsequent EAGG meta-analyses focused on ADHD core symptoms and on ADHD-related problems. A meta-analysis 38 specifically focusing on behavioural interventions showed that, even when considering probably blinded ratings, the behavioural interventions were efficacious at improving important aspects related to ADHD, namely parenting (SMD for positive parenting 0.63; SMD for negative parenting 0.43) and conduct problems (SMD 0.31). Another updated meta-analysis 39 on cognitive training, which was found efficacious in improving verbal and visual working memory, which are impaired in a sizeable portion of children with ADHD and have been demonstrated to dissociate from ADHD symptoms. 40 These meta-analyses also suggest that training which targets several neuropsychological aspects may be more efficacious at improving ADHD symptoms, than training targeting only one aspect of cognitive functioning. The most recent meta-analysis 41 by the EAGG on neurofeedback did not provide support for the efficacy of neurofeedback on any of the neuropsychological and academic outcomes. Overall, this body of research does not provide solid evidence to routinely recommend non-pharmacological interventions as highly effective treatments for ADHD core symptoms, although some of them (eg, behavioural interventions or cognitive training) may be effective for important associated impairments (oppositional behaviours and working memory deficits, respectively). The role of fatty acid supplementation and artificial food colours exclusion as possible treatment strategies should be considered cautiously given the small effect size, with CIs close to non-significance.

Probably, the most crucial area of future treatment research in ADHD will be to gain insight into the long-term positive and negative effects of treatments, using randomised trials with withdrawn designs, as well as additional population-based studies with self-controlled methodologies and longitudinal follow-up studies. These should clarify the conclusions from the various follow-up waves of the Multimodal Treatment of ADHD (MTA) study, showing that neither the type and intensity of treatment received during the initial 15-month randomised phase of the study (treatment as usual medication (MED), behavioural therapy (BEH), medication plus behavioural therapy (COMB)) nor exposure to medication over the subsequent observational periods predicted the functional outcome at follow-up which has now extended to 16 years. Of note, in the MTA, the treatments received in the three experimental arms (MED, BEH, COMB) during initial 15-month randomised phase were carefully crafted in an attempt to achieve optimal outcomes. After this initial phase all participants were free to choose the type of treatment they received from their regular provider. As it is likely that these treatments were not as carefully optimised and monitored as the three experimental groups during the randomised  phase, these  longer term findings of the MTA are not easily interpretable and might be, to some extent, misleading.

Conclusions

Many questions have been successfully answered in the field of ADHD. Many others remain to be addressed. Additional multidisciplinary collaborations, use of large data sets in the spirit of Open Science and support of research activities in less advantaged countries are key to address the challenge.

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Contributors SC drafted the paper. DC revised the first draft.

Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

Competing interests SC declares reimbursement for travel and accommodation expenses from the Association for Child and Adolescent Central Health (ACAMH) in relation to lectures delivered for ACAMH, and from Healthcare Convention for educational activity on ADHD. DC declares grants and personal fees from Shire and Servier; personal fees from Eli Lilly, Novartis and Oxford University Press; and grants from Vifor.

Patient consent Not required.

Provenance and peer review Not commissioned; externally peer reviewed.

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Hope for children with ADHD: new study finds that non-invasive brain stimulation treatment can ease symptoms

Non-invasive brain stimulation, combined with cognitive training, could significantly improve symptoms of attention deficit hyperactivity disorder (ADHD) in children, according to new research jointly led by the University of Surrey and the Hebrew University of Jerusalem.  

In a clinical trial involving 23 unmedicated children (6 to 12 years old) with ADHD, researchers set out to find out whether a novel form of brain stimulation that involves a mild electrical current on the brain through two electrodes, during cognitive training, can improve the symptoms of ADHD.  

After a two-week programme of brain stimulation, the study found that 55% of children showed significant clinical improvements in ADHD symptoms, as reported by their parents. This was compared to 17 percent in the control group who received sham (placebo) brain stimulation, during cognitive training.  

The study also found that these improvements were maintained three weeks after the end of the treatment, with 64 percent reporting clinically meaningful responses to the treatments. This is compared to 33 percent in the control group.  

 Professor Roi Cohen Kadosh, co-lead of the study, Head of the School of Psychology and Professor of Cognitive Neuroscience at the University of Surrey, said: 

"I believe that the scientific community is duty-bound to investigate and develop evermore effective and longer-lasting treatments for ADHD. The findings we demonstrate in our study suggest that a combination of transcranial direct current stimulation (tRNS), which is shown to be safe with minimal side effects, has the potential to transform the lives of children and their families.  

 "The results from this proof-of-concept study, together with previous results we received using tRNS, increase our confidence that in the future non-invasive brain stimulation may be able to provide an alternative to medication as a treatment pathway for children. However, our important test will be the results from a multi-centre clinical trial with a larger sample that we will start soon. If successful, this approach will be approved as a medical device for ADHD by the United States Food and Drug Administration." 

 ADHD is a brain condition that affects people's attention, activity, and impulsivity. Around 5.2 percent of children worldwide have the condition, which usually manifests itself with children struggling with focus, memory, and self-control.  

 Following the treatment, the research team also noticed changes in the children's brain electrical activity patterns that continued even at the 3-week follow-up.  

Dr Mor Nahum, co-lead of the study and Head of the Computerized Neurotherapy Lab at the Hebrew University where the study took place adds that “This is an important first step in offering new therapeutic options for ADHD. Future studies, with larger and more varied samples, should help establish this as a viable therapy for ADHD, and help us understand the underlying mechanisms of the disorder.” 

Professor Itai Berger, co-lead of the study, Head of Pediatric Neurology previously at Hadassah, currently at Assuta-Ashdod University Medical Center who recruited the study participants add that: “If the results will be replicated in future larger studies we will be able to offer a novel, promising non-invasive, and safe treatment to large number of children and their families not only in the field of ADHD but in other neuro-developmental disorders.”    

Ornella Dakwar-Kawar, a post-doctoral researcher at The Hebrew University of Jerusalem  

"ADHD is one of the most common neurodevelopmental disorders affecting children across the world. Treating the condition with medication improves a child’s attention span and overall mood, however in certain cases there can be side effects including headache and a loss of appetite. There is therefore a pressing need for developing and testing novel, non-pharmacological interventions for ADHD. Results from the current proof-of-concept study provide a preliminary direction towards a novel intervention in pediatric ADHD." 

  The study has been published by Translational Psychiatry . This research was funded by a grant from the Israel Innovation Authority to Tech Innosphere Engineering Ltd. 

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• School of Medicine

CANDAL aims to bring together clinicians, service users and academics with an interest in neurodevelopmental disorders, including attention deficit/hyperactivity disorder (ADHD), autism spectrum disorder (ASD) and Tourette syndrome (TS).

The centre was established as an Institute of Mental Health (IMH) Centre of Excellence in 2012 under the directorship of Chris Hollis, Professor of Child & Adolescent Psychiatry.

Research issues

Neurodevelopmental disorders such as Attention Deficit Hyperactivity Disorder (ADHD), Tourettes Syndrome (TS), and Autism spectrum Disorder (ASD) are common and impairing conditions that frequently co-exist and affect about 1 in 20 people across the lifespan.

The recognition of these conditions has increased rapidly in recent years leading to concerns about both over- and under- diagnosis. The growing awareness that these conditions not only affect children and young people, but typically persist into adult life has created a significant unmet clinical and research need to understand developmental factors in presentation and treatment response.

CANDAL is unique because unlike other research groups that typically focus on a single disorder either in children or adults, we study these conditions in combination and across the lifespan.

How we are tackling neurodevelopmental disorders

• Engaging in world leading research into the causes, mechanisms, course, recognition and treatment of neurodevelopmental disorders across the lifespan
• Translating research findings into clinical practice to improve recognition, diagnosis and treatment outcomes
• Developing a clinical database/ registry and ‘research clinics’ to facilitate research participation and outcomes
• Supporting clinical innovations, including the development and evaluation of new healthcare technologies for the assessment, diagnosis and treatment of neurodevelopmental disorders
• Strengthening links and the exchange of ideas and knowledge between researchers, clinicians and service users/ members of the public
• Fostering and enhance collaborations including with industry

Our latest publications

• Sonuga-Barke, E.J.S., Brandeis, D., Cortese, S., Daley, D., Ferrin, M.T., Holtmann, M., Stevenson, M., Danckaerts, M., Van Der Oord, S., Döpfner, M., Dittmann, R., Simonoff, E., Zuddas, A., Banaschewski, T., Buitelaar, J., Coghill, D., Hollis, C., Konofal, E., Lecendreux, M., Wong, I.C.K. And Sergeant, J., 2013. Non-Pharmacological Interventions For Adhd: Systematic Review And Meta-Analyses Of Randomised Controlled Trials Of Dietary And Psychological Treatments. American Journal Of Psychiatry. 170(3), 275-289
• Swift, K.D., Hall, C.L., Marimuttu, V.J., Redstone, L., Sayal, K. And Hollis, C., 2013. Transition To Adult Mental Health Services For Young People With Attention Deficit/Hyperactivity Disorder (Adhd): A Qualitative Analysis Of Their Experiences Bmc Psychiatry. 13, 74
• Groom, M.J., Liddle, E.B., Scerif, G., Liddle, P.F., Batty, M.J., Liotti, M. And Hollis, C.P., 2013. Motivational Incentives And Methylphenidate Enhance Electrophysiological Correlates Of Error Monitoring In Children With Attention Deficit/Hyperactivity Disorder. Journal Of Child Psychology And Psychiatry.
• Batty, M.J., Moldavsky, M., Foroushani, P.S., Pass, S., Marriott, M., Sayal, K. And Hollis, C., 2012. Implementing Routine Outcome Measures In Child And Adolescent Mental Health Services: From Present To Future Practice. Child And Adolescent Mental Health. (In Press.)
• Sayal, K., Daley, D., James, M., Yang, M., Batty, M., Taylor, J., Pass, S., Sampson, C., Sellman, E., Valentine, A. And Hollis, C., 2012. Protocol Evaluating The Effectiveness Of A School-Based Group Programme For Parents Of Children At Risk Of Adhd: The 'Parents, Teachers And Children Working Together (Patchwork)' Cluster Rct Protocol Bmj Open. 2(5), 7
• Jackson, S.R., Parkinson, A., Manfredi, V., Millon, G., Hollis, C. And Jackson, G.M., 2012. Motor Excitability Is Reduced Prior To Voluntary Movements In Children And Adolescents With Tourette Syndrome J Neuropsychol. 7(1), 29-44

For all of our publications, please visit our members' profiles .

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• New research provides reassurance that the most common ADHD drug is not linked to psychotic symptoms
• £1.5m study to test diagnostic tool for child and adolescent mental health
• School year 'relative age' causing bias in ADHD diagnosis, says research

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ADHD articles from across Nature Portfolio

ADHD – attention deficit hyperactivity disorder – is a neurodevelopmental disorder that involves problems with attention, concentration and/or increased activity levels, resulting in problems with school, work and social situations. Individuals with ADHD also often experience trouble with impulse control.

Latest Research and Reviews

Exploring the relationship between admixture and genetic susceptibility to attention deficit hyperactivity disorder in two Latin American cohorts

• Nicolás Garzón Rodríguez
• Ignacio Briceño-Balcázar
• Maria Fernanda Quiroz-Padilla

Perspectives on parental support of attention deficit hyperactivity disorder self-management at the transition to adulthood

This Review discusses the specific challenges and strategies in supporting individuals with ADHD during the critical transition to adulthood and outlines arguments for engaging and training parents.

• Hong N. T. Bui
• Nicholas P. Marsh
• Andrea Chronis-Tuscano

Cortico-striatal differences in the epigenome in attention-deficit/ hyperactivity disorder

• Gauri G. Shastri
• Gustavo Sudre
• Philip Shaw

Maternal diabetes and risk of attention-deficit/hyperactivity disorder in offspring in a multinational cohort of 3.6 million mother–child pairs

In a large multinational cohort study, maternal, gestational or pregestational diabetes was associated with only a small-to-moderate risk of ADHD in offspring, contrary to previous estimates that showed stronger effect sizes, attributing the differences in findings to confounding by shared genetic and familial factors.

• Adrienne Y. L. Chan
• Ian C. K. Wong

Tau pathology is associated with synaptic density and longitudinal synaptic loss in Alzheimer’s disease

Transcranial random noise stimulation (tRNS) improves hot and cold executive functions in children with attention deficit-hyperactivity disorder (ADHD)

• Vahid Nejati
• Mahshid Dehghan
• Michael A. Nitsche

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Gestational epigenetic age and ADHD symptoms in childhood: a prospective, multi-cohort study

• Kristina Salontaji
• Kristine L. Haftorn
• Charlotte A. M. Cecil

Connecting clinical and genetic heterogeneity in ADHD

Understanding clinical heterogeneity in attention deficit hyperactivity disorder (ADHD) is important for improving personalized care and long-term outcomes. A study exploits the large scale and breadth of phenotyping of the iPSYCH cohort to link clinical heterogeneity to genetic heterogeneity in ADHD.

• Chloe X. Yap
• Jacob Gratten

Treatment dilemmas in childhood ADHD

Stimulants and α 2 -adrenergic agonists both improve symptoms of ADHD in preschool-age children, but they have different side effects.

• Karen O’Leary

Leveraging aggression risk gene expression in the developing and adult human brain to guide future precision interventions

• Sarah L. Rader
• Alan S. Lewis

Molecular Psychiatry , August 2020: new impact factor, and highlights of recent advances in psychiatry, including an overview of the brain’s response to stress during infection with the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2)

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Polycystic ovarian syndrome and autism spectrum disorder in the offspring: Should the primary outcome have been different?

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New study on ADHD in adults with recurrent depression

6 January 2022

Researchers from the Wolfson Centre for Young People’s Mental Health have undertaken work to investigate the prevalence and impact of attention-deficit/hyperactivity disorder (ADHD) in recurrently depressed adult women.

The study, led by Dr Victoria Powell, found that 12.8% of women with a history of recurrent depression also had elevated ADHD symptoms. Additionally, a small percentage of the women sampled met the diagnostic criteria for ADHD, but none of the women had received a diagnosis of ADHD from a medical professional.

Dr Powell said: “In a sample of women in mid-life taken from a UK-based prospective cohort of adults with a history of recurrent depression, we investigated the prevalence of ADHD and the association of ADHD with clinical features of depression. “Those with attention-deficit/hyperactivity disorder may be at risk of a more chronic and impairing depression compared to those with depression alone according to studies of young people. However, no studies to date have examined ADHD in recurrently depressed adults in mid-life.

“In our study, higher ADHD symptoms appear to mark a worse clinical presentation for depression. Clinical implications include that in women with early-onset, impairing and recurrent depression, the possibility of underlying ADHD masked by depression needs to be considered.”

The study found that ADHD was associated with earlier onset, more impairing, and recurrent depression and that recurrently depressed women with elevated ADHD symptoms were more likely to be hospitalised than those without. The study also found that ADHD was associated with being on an antidepressant that is not a typical first choice antidepressant, suggesting that clinicians may have had difficulty finding an effective antidepressant medication for these women.

Dr Powell concluded: “We know those with ADHD can be at an increased risk of developing prolonged and impairing depression. This study is the first of its kind, with no studies to date, have examined ADHD and its impact on depression presentation in recurrently depressed adults in mid-life. The findings suggest that recurrent depression may in some cases mask ADHD symptoms in adult women.

“We hope that these findings will make a tangible difference in a clinical setting, particularly for women with recurrent depression that could potentially be masking underlying, undetected ADHD. I’m looking forward to continuing to work with colleagues here at the Wolfson Centre to undertake further studies that will have real-world implications and make a difference in the field of mental health research.”

The research paper, ADHD in adults with recurrent depression , is published in the Journal of Affective Disorders and is available to view online .

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13 September 2021

Dr Victoria Powell

Research Associate, Division of Psychological Medicine and Clinical Neurosciences

The latest from Cardiff University.

Help with our ADHD research

About this study.

At the National Centre for Mental Health (NCMH), we are trying to understand why some young people experience neurodevelopmental difficulties, such as Attention Deficit Hyperactivity Disorder (ADHD) or autism, and mental health problems, like depression or anxiety.

ADHD is a complex condition which can affect individuals in different ways. We are trying to understand more about ADHD and to help us do this, we are looking for volunteers to take part in research.

We need as many people as possible to take part –wherever you live in the UK.

Not much is known about what happens to children with neurodevelopmental and mental health difficulties as they get older. Linking the information you provide to other records will help us get an even better understanding of these difficulties now and improve treatment and support in the future.

To take part

If you are happy to take part in this study ple ase visit our online survey platform to ge t started.

What will I have to do?

If you decide to take part, we will ask you to provide us with some basic information about you, your child and their neurodevelopment and mental health in order to help us answer these important research questions.

The questions will ask about one child with an ADHD diagnosis. If you have more than one child with an ADHD diagnosis, the questionnaire can be completed multiple times.

Taking part is voluntary: it’s up to you to choose if you want to sign up.

If you join us, you’ll be asked whether you would be willing to:

• Provide us with your contact details (e.g. address, email address and phone number) and some personal information about you and your child (e.g. date of birth, ethnic group and employment status).
• Answer some questions about your child’s mental and physical health and lifestyle. This will take approximately 15-20 minutes.
• Allow us to contact you every 6-12 months, to invite you to provide more information about you and your child’s lifestyle, general health and mental health.
• Allow us to contact you in the future about other studies that you may want to take part in. There will be no obligation for you to take part in these future opportunities.
• Allow us to share anonymous information with other researchers if they have scientific and ethical approval for the questions that they would like to answer.
• To help make your participation even more valuable. We would like to link the information you have provided us with, to information that the NHS and other public organisations collect about you e.g. GP, hospital and education records.

Looking for more information first? We’ve put together the answers to some frequently asked questions.

This survey is led by the National Centre for Mental Health (NCMH). NCMH is a Welsh Government funded Research Centre, led by Cardiff, Swansea and Bangor Universities. It is being funded by Health and Care Research Wales, Welsh Government.

The Director of the National Centre for Mental Health is Professor Ian Jones.

You will have the opportunity to join the study once you have read through and understood the information.

We hope that learning more about neurodevelopmental and mental health difficulties will lead to new ways of diagnosing, treating or even preventing neurodevelopmental problems and mental illness.  However, these remain long-term aims and you will not benefit directly from taking part in this study.

Only the study team will have access to your data and only they will contact you directly.

All information collected during the course of the research will be kept strictly confidential. There are strict laws that safeguard your privacy at every stage. In accordance with the General Data Protection Regulation (GDPR) and the Data Protection Act, you and your child’s personal information will be kept confidential by assigning a unique study code to the data.

Your name and identifying information about you or your child will not be passed on to anyone.

When you agree to take part and sign up, you will be asked to provide contact details and some other information about you and your child such as your age and ethnic group. You will also be asked to answer some questions about your child’s lifestyle, general health and mental health.

First, you need to join the study. This involves reading this information and then consenting below.  This should take about five minutes. Take as much time as you need to decide whether you wish to take part.

Once you have joined, you will be asked some questions. This should take about 15-20 minutes to finish.

We know that we get the best data if you are able to complete these questions in one go, but if for some reason this isn’t possible then you can come back to the website later because you can save your answers once you have finished a set of questions.

We will also contact you every 6-12 months, to keep in touch and to ask you more questions about your child’s lifestyle, general health and mental health. We might ask you for information that you haven’t given before. Sometimes we will ask you the same questions as before so that we can see how things have changed.

As well as this regular contact, the study team may contact you from time to time, to ask if you would like to take part in new studies.

You may be contacted because you or your child have a specific condition (for example depression), or because of something that you have told us about (for example, your child’s age). These studies may be conducted by other research teams.

We will give you more information about these studies including why the research is being carried out, what you might be asked to do and how to sign up. It is up to you to decide whether you want to take part in these new studies.

You do not have to take part in this study.

If you do decide to take part you are still free to withdraw at any time without giving a reason.

If you decide to withdraw from this study, all details you have provided will be destroyed. These will not be used further in the research.

This is a long term study that will allow us to learn a lot about the causes and triggers of mental health and neurodevelopmental problems. The information you provide will be stored for use on a long term basis (at least 15 years).

You will not have any claim to any future commercial use of results from the study in which your data has been used.

To make the best use of resources we will share data (anonymised to exclude any personal details) with different groups of researchers from the NHS, universities and commercial companies, both within the UK and abroad. However, we would stress that those organizations will never obtain access to personal/ identifying information (for example, your name, address, date of birth).

Ethical approval has been obtained from the National Research Ethics Service and NHS (Research and Development) permission has also been obtained.

If you have further questions about the study please contact the study team:

National Centre for Mental Health

Cardiff University

Hadyn Ellis Building,

Maindy Road,

029 20688401

[email protected]

Yes, you can contact Dr Vanessa Davies on 029 2068 8340 or at  [email protected] .

You can also write to her at:

Dr Vanessa Davies Institute Manager Neuroscience and Mental Health Research Institute 3rd Floor, Hadyn Ellis Building Maindy Road Cardiff CF24 4HQ

If you are happy to take part in this study please visit our online survey platform to get started.

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ADD/ADHD Online Information

ADHD Research Roundup: December 15, 2023

What is new in research on ADHD?

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In this Research Roundup, we explore new studies on attention-deficit/hyperactivity disorder (ADHD), clinical outcomes of medicinal cannabis therapy as an ADHD treatment, and the connections between ADHD and sleep disturbances, pediatric bipolar disorder, and more.

Sleep Disturbances in Comorbid ADHD and ASD This literature review explores the recognition, assessment, and treatment of comorbid attention-deficit/hyperactivity disorder (ADHD), autism spectrum disorder (ASD), and sleep disruption, with a focus on children, adolescents, and emerging adults. Integrating existing literature up to September 2022, the analysis revealed complex clinical presentations of comorbid ADHD, ASD, and sleep disruption, emphasizing the high prevalence of co-occurrence and the need for integrated, multidimensional approaches to assessment and treatment.

“Assessment of ASD symptomatology in youth with ADHD, and the reverse, in cases with disrupted sleep is critical to address the special challenges for case formulation and treatment,” the investigators concluded. “Evidence-based approaches to treatment planning and multi-treatment modalities should consider combining psychosocial and biological interventions to address the complexities of each case.”

Petti T, Gupta M, Fradkin Y, Gupta N. Management of sleep disorders in autism spectrum disorder with co-occurring attention-deficit hyperactivity disorder: update for clinicians .  BJPsych Open . 2023;10(1):e11.

Shared Neurobiological Bases of ADHD and Pediatric Bipolar Disorder in Children and Adolescents This meta-analysis of whole-brain voxel-based morphometry studies in ADHD and pediatric bipolar disorder (PBD) revealed shared gray matter volume (GMV) alterations in the right insula and anterior cingulate cortex, suggesting a transdiagnostic issue in attention and emotion regulation. Distinctive GMV patterns in the right inferior frontal gyrus, left orbitofrontal cortex, and hippocampus also were more pronounced in PBD, while ADHD exhibited more significant alterations in the left precentral gyrus, left inferior frontal gyrus, and right superior frontal gyrus.

“These findings suggest that PBD and ADHD are characterized by both common and distinct patterns of GMV alterations,” the investigators concluded. “Their overlapping abnormalities might represent a transdiagnostic problem of attention and emotion regulation shared by PBD and ADHD, while the disorder-differentiating substrates might contribute to the relative differences in cognitive and affective features that define the 2 disorders.”

Long Y, Pan N, Yu Y, et al. Shared and distinct neurobiological bases of bipolar disorder and attention-deficit/hyperactivity disorder in children and adolescents: a comparative meta-analysis of structural abnormalities .  J Am Acad Child Adolesc Psychiatry .

Outcomes of Medicinal Cannabis Therapy for ADHD This study analyzed the health-related quality of life (HRQoL) and safety outcomes in patients with ADHD who were treated with cannabis-based medicinal products (CBMPs). Significant improvements were observed in general HRQoL, anxiety levels, and sleep quality over 12 months of treatment, and adverse events were generally well-tolerated. Although these findings suggest a potential association between CBMP treatment and positive outcomes in ADHD patients, the study underscores the need for cautious interpretation.

“Results must be interpreted with caution, as a causative effect cannot be proven,” the investigators concluded. “These results, however, do provide additional support for future evaluation within randomized controlled trials.”

Ittiphakorn P, Erridge S, Holvey C, et al. UK Medical Cannabis Registry: an analysis of clinical outcomes of medicinal cannabis therapy for attention-deficit/hyperactivity disorder .  Neuropsychopharmacol Rep .

Note: This Research Roundup was prepared with the assistance of ChatGPT.

Let us hear from you!  Want to share your insights with colleagues on the latest research on ADHD and other psychiatric disorders, treatments, and issues? Write to us at [email protected].

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Infected blood scandal: Bereaved families say loved ones who died after being contaminated were being 'used for research'

Jason Evans, director of the campaign group Factor 8 believes that instead of stopping treatment, clinicians lobbied to continue trials, even after identifying the association between hepatitis and the treatment.

Health correspondent @ashishskynews

Wednesday 8 May 2024 07:44, UK

Bereaved families who lost loved ones in the contaminated blood scandal say they have seen evidence that proves their relatives were being "used for research" without their knowledge and despite clinicians knowing the risks.

Historical notes in medical records found by campaigners are said to show that some patients being treated for the blood clotting disorder haemophilia in the 1970s and 1980s were given blood plasma treatment which doctors knew might be contaminated and infect them with hepatitis.

Clinicians involved in the treatment have maintained they wanted to study the links between the haemophilia treatment Factor VIII and the risk of infection.

Jason Evans, director of the campaign group Factor 8, believes that instead of stopping treatment, clinicians lobbied to continue trials, even after identifying the association between hepatitis and the treatment.

He has found notes alluding to the research in his own father's medical records.

Read more: Infected blood compensation scheme 'to be extended' Campaigners concerned govt may seek to delay paying compensation

Mr Evans, whose father died in 1993 after being infected with both HIV and hepatitis C during the course of his treatment for haemophilia, said: "It is appalling that hundreds of people with haemophilia across the country were knowingly infected with lethal viruses under the guise of scientific research.

"These secret experiments, conducted without consent, show individuals were treated as mere test subjects, not human beings.

"The fact that this could happen on such a scale, over such a long period of time, is almost incomprehensible."

Documents - obtained through Freedom of Information requests and medical records provided by families - reveal a timeline of the trials, led by a senior medic who worked for the now defunct Public Health Laboratory Service, say campaigners.

Becka Pagliaro from Waterlooville, near Portsmouth, said she was "shocked" to find notes about the trials in her father's patient notes.

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Her father Neil King was co-infected with both HIV and hepatitis C while receiving treatment for haemophilia. He died in 1996 when he was 38 years old.

"When I got his medical records I saw he was part of this research which I know was something that he would not have agreed to, so that was done covertly," Ms Pagliaro said.

"I was really shocked - I wondered first of all whether I had received someone else's medical records because I could not believe what I was seeing."

Janine Jones' brother Mark Payton died when he was 41 after being co-infected with both hepatitis C and HIV.

"When I saw the research was on my brother's records I thought: 'What's this?' And after asking a few questions I didn't get anywhere," said the 59-year-old from Warwickshire.

"It was only the last few months that it really came to light - they were being used for research."

Emma Frame, from South Shields, said that her father had never agreed to be part of studies but found multiple references to them in his medical records.

Ms Frame said: "I have all of his records which is where I came across these studies.

"There is no information other than this doctor's name, a treatment and then a date. With my dad it was recorded several different times.

"It's absolutely mind-blowing the information that is out there that has been hidden."

Jeffrey Frame was co-infected with HIV and hepatitis C and died in 1991 when he was just 39.

Ms Frame said that in the mid 1990s she also discovered that the NHS had kept some of her father's "samples", which had not been discussed with the family.

"They still had actual physical samples of my dad who had died years previous," she said.

Keep up with all the latest news from the UK and around the world by following Sky News

Tens of thousands of people were infected with contaminated blood through infected blood products or blood transfusions, largely between the 1970s and 1980s.

People were infected with hepatitis or HIV, and in some cases with both.

An estimated 3,000 people have died as a result, while those who survived have lived with life-long health implications.

Des Collins, senior partner of Collins Solicitors, which represents 1,500 victims and their families, said: "There is now overwhelming evidence that the NHS failed patients on a number of levels in the 70s and 80s and certainly in ways we find shocking and abhorrent.

"We are looking forward to Sir Brian Langstaff's final Inquiry report in a few weeks' time, which will lay out the wrongs perpetrated in comprehensive fashion.

"Not only will this reinforce the case for compensating victims and their families, but importantly will shine a light on the lessons to be learned so that mistakes of the past are never repeated again."

The Infected Blood Inquiry will publish its final report on the scandal on 20 May.

Related Topics

• Infected Blood Inquiry

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A trial of lenzilumab for acute graft versus host disease (RATinG)

Cancer type:.

This is a trial of lenzilumab for people with high risk acute graft versus host disease.

There are 2 types of graft versus host disease (GvHD):

• acute GvHD (aGvHD)
• chronic GvHD (cGvHD)

This trial is open to people with acute GvHD who:

You pronounce lenzilumab as lens-ill-lu-mab.

More about this trial

One of the main treatments for GvHD are steroids. Unfortunately steroids don’t work for some people with aGvHD. So researchers are always looking for new treatments for these people. 

Doctors think lenzilumab will help people who have high risk GvHD. This means the acute GvHD is more likely to be severe. You have a blood test as part of this trial to see if you have high or low risk acute GvHD. 

There are 2 parts to this trial. In the first part of the trial they want to find out if it is safe to give lenzilumab to people with high risk aGvHD. If they find it is, then they will go on to the second part of the trial.

In the second part of the trial there are 2 groups. The:

• treatment group
• observation group

The aims of the trial are to find out:

• whether it is safe to give lenzilumab to people with high risk aGvHD
• how well lenzilumab works for people with high risk aGvHD 

Who can enter

The following bullet points are a summary of the entry conditions for this trial. Talk to your doctor or the trial team if you are unsure about any of these. They will be able to advise you.

Who can take part

You may be able to join this trial if all of the following apply. You:

• have had a stem cell transplant from a donor (an allogenic transplant) 
• are to have treatment with steroids either taken by mouth such as tablets or as a drip into a vein (infusion) to treat your aGvHD 
• are up and about for some of the day and might need help looking after yourself ( performance status 0, 1,2 or 3 )
• are at least 16 years old

For the treatment group The following must also apply. You

• have a high risk of developing severe aGVHD. Your doctor will know this. 
• are willing to use reliable contraception during treatment and for a time after if there is any chance you or your partner could become pregnant.

For the observation group

You have a low risk of developing severe aGVHD. Your doctor will know this. 

Who can’t take part

You cannot join this trial if any of these apply. You:

• are taking other medications for GvHD. This is apart from medications that you were taking before the transplant to prevent GvHD or starting those medications again after the transplant. Your doctor will know about this. 
• are only using steroid cream for GvHD 
• have had more than 4 days of steroid tablets or through a drip into a vein to treat acute GvHD. Or up to a total dose of 20mg if you are taking steroids for another condition. Your doctor will know about this.
• have active hepatitis B or hepatitis C that needs treatment
• are pregnant or breastfeeding 

Trial design

This is a phase 2/3 trial . There are 2 parts to the trial.

Part 1 - open to recruitment In this part the team need 20 people with high risk acute GvHD (aGvHD). Everyone will have lenzilumab and steroids. 

You have lenzilumab as a drip into a vein . You have the first treatment within 7 days of starting steroids for your aGvHD. You have:

• the second treatment 2 weeks later and then
• the remaining 4 treatments every 3 weeks 

You have a total of 6 doses. This takes about 14 weeks.

The team want to know if it is safe to give lenzilumab to people with high risk aGvHD.

Part 2 – currently not open to recruitment There are 2 groups in this part. They are the:

Treatment group  The team need 220 people with high risk aGvHD to join. 

It is a randomised trial . A computer puts you into a group. Neither you nor your doctor can choose which group you go into. And neither you nor your doctor will know which group you are in. This is a double blinded trial. 

Your doctor will be able to find out which group you are in if it is necessary to do so.

You have one of the following:

• a dummy drug ( placebo )

RATinG trial diagram

You have lenzilumab or the placebo as a drip into a vein . You have the first dose within 7 days of starting steroids for your aGvHD. You have:

You have a total of 6 doses. This takes about 14 weeks. 

Observation group The team want to recruit as many people as they can to this group. You see the doctor in the clinic as part of the trial. You don’t have any treatment as part of this trial. 

They then take another blood sample at 4 weeks to look at the same biomarker. 

If there is any remaining blood from the samples, the team will ask to store this away for future research. You don’t have to agree to your blood samples being stored. You can still take part in the trial.

Quality of life – people in part 1 and treatment group  You fill in a questionnaire:

• before starting treatment
• during treatment and 
• after treatment

The questions ask about:

• your general health and wellbeing
• side effects
• what you can do in your daily life

This is a quality of life questionnaire .

Hospital visits

Everyone sees the doctor for tests before you take part. These tests include:

• blood tests
• assessment of your GvHD

People in part 1 and treatment group You see the doctor before each treatment. This is to see how you are and for blood tests. 

After treatment you see the doctor for the same tests at:

You see the doctor every year until the end of the trial.  This is to see how you are.

Observation group You then see the doctor for the same tests at:

You see the doctor every year until the end of the trial This is to see how you are.

Side effects

People in part 1 and treatment group  The trial team monitor you during treatment and afterwards. Contact your advice line or tell your doctor or nurse if any side effects are bad or not getting better. 

The possible side effects of lenzilumab are:

• a reaction while having the infusion. Symptoms include feeling sick, low blood pressure, pressure on the chest, changes to heart rate, shortness of breath, fever, headache, chills, difficulty breathing and skin changes. 
• changes to how well your lungs work

We have information about steroids and their side effects . 

Your doctor will talk to you about the possible side effects of the treatments and answer questions you might have before you agree to take part. 

Recruitment start:

Recruitment end:.

• How to join a clinical trial

Please note: In order to join a trial you will need to discuss it with your doctor, unless otherwise specified.

Chief Investigator

Professor Adrian Bloor

Supported by

University of Birmingham IMPACT Partnership Humanigen Inc

If you have questions about the trial please contact our cancer information nurses

Freephone 0808 800 4040

Last review date

Cruk internal database number:, last reviewed:.

• What clinical trials are
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US Bill Would Require US to Coordinate Japan AUKUS Role With UK and Australia

FILE PHOTO: U.S. President Joe Biden, Australian Prime Minister Anthony Albanese and British Prime Minister Rishi Sunak deliver remarks on the Australia - United Kingdom - U.S. (AUKUS) partnership, after a trilateral meeting, at Naval Base Point Loma in San Diego, California U.S. March 13, 2023. REUTERS/Leah Millis/File Photo

WASHINGTON (Reuters) - A bipartisan group of senior U.S. senators introduced legislation on Wednesday to require officials involved in the AUKUS defense project with Britain and Australia to engage with them and Japan on how Japan could be included in the project.

A bill, introduced by Republicans Mitt Romney, Bill Hagerty and Jim Risch, and Democrat Tim Kaine, would require the U.S. to coordinate a path forward for Japan's cooperation on advanced technology projects under the so-called Pillar 2 of AUKUS.

AUKUS was formed in 2021 to counteract China's growing power. Its first pillar involves cooperation between the three partners to provide Australia with nuclear powered submarines, but they have raised the possibility of other countries joining a second pillar to develop other high-tech weaponry.

The partners announced in April they were considering working with Japan on specific Pillar 2 projects and would hold talks this year.

In a statement from his office shared with Reuters announcing the Coordinating AUKUS Engagement with Japan Act, Romney said the U.S. must link arms with allies to push back against China's increased "aggression."

"The legislation would require ... (AUKUS) coordinators at both the U.S. Departments of State and Defense to engage with the Japanese government, and consult with counterparts in the U.K and Australia, to discuss what including Japan in certain advanced technology cooperation activities under the AUKUS framework would look like," the statement said.

Photos You Should See - April 2024

It quoted Kaine as saying AUKUS was "critical to keeping the Indo-Pacific free and open" and the bill would help "outline a path for Japan’s inclusion in AUKUS and expand defense industrial cooperation among U.S. allies."

Risch, the ranking member of the Senate Foreign Relations Committee, said the legislation would require the Biden administration to engage Japan on its interest in joining AUKUS, assess what unique technological contributions Tokyo could make and whether its export-control system was sufficiently aligned to that of the existing partners.

"Importantly, it also ensures the executive branch consult with its counterparts in the United Kingdom and Australia before expanding AUKUS," he said.

AUKUS already faces hurdles from strict U.S. restrictions on sharing technology and there has been some hesitation about involving Japan, with officials and experts highlighting its cyber and information security vulnerabilities.

(Reporting by David Brunnstrom; Editing by Chizu Nomiyama)

Copyright 2024 Thomson Reuters .

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New book on Ideology and Utopia in Comparative Communications Studies available free from LSE Press

Dead Men’s Propaganda offers a fascinating account of the genealogy of comparative communications.

Today (Wednesday 8 May) marks the launch of Dead Men’s Propaganda: Ideology and Utopia in Comparative Communications Studies by Terhi Rantanen, Professor of Global Media and Communications in LSE's Department of Media and Communications.  The book is open access and free to read from today through LSE Press, the School's publisher of high-quality, open access research in the social sciences. 

In Dead Men's Propaganda: Ideology and Utopia in Comparative Communications Studies , Terhi Rantanen investigates the shaping of early comparative communications research between the 1920s and the 1950s, notably the work of academics and men of practice in the United States. Often neglected, this intellectual thread is highly relevant to understanding the 21st-century’s challenges of war and rival streams of propaganda.    

 Borrowing her conceptual lenses from Karl Mannheim and Robert Merton, Rantanen draws on detailed archival research and case studies to analyse the extent and importance of work outside and inside the academy, illuminating the work of pioneers in the field. Some of these were well-known academics such as Harold Lasswell and the authors of the seminal book Four Theories of the Press. Others operated in the world of news agencies, such as Associated Press's Kent Cooper, or were marginalised as émigré scholars, notably Paul Kecskemeti and Nathan Leites. Her study shows how comparative communications, from its very beginning, can be understood as governed by the Mannheimian concepts of ideology and utopia and the power play between them. The close relationship between these two concepts resulted in a bias in knowledge production, contributed to dominant narratives of generational conflicts, and to the demarcation of Insiders and Outsiders.   

 By focusing on a generation at the forefront of comparative communications at this pivotal time in the 20th century, this book challenges orthodoxies in the intellectual histories of communication studies.   

 Professor John C. Nerone, Professor Emeritus of Communications Research, University of Illinois at Urbana-Champaign says: " Dead Men’s Propaganda offers a fascinating account of the genealogy of comparative communications. Terhi Rantanen draws on decades of archival research to present nuanced and vivid portrayals of key figures in communication research and propaganda studies in the forty years following the First World War. Using concepts drawn from Karl Mannheim and Robert K. Merton, she shows how a generation of scholars and professionals from different fields and countries negotiated the ideological currents and utopian visions of their age. Anyone interested in the history of communication research has to read this book." 

This book is primarily intended for second year and upwards undergraduate students in media and communications studies, comparative communications, propaganda studies, and sociology students. Each chapter is also downloadable on its own for use in courses considering only some of the ten theorists covered. 

Behind the article

To download the book please visit: https://doi.org/10.31389/lsepress.wmf 

LSE Press  is an academic publisher of innovative social science books and journals distributed to a wide public readership through Open Access. The press fosters high-quality, innovative, and experimental social science publications through a range of peer-reviewed books and journals.