Research collaboration with ADHD Europe or Member Organisations
One of our most prioritized missions is to promote the collaboration of scientific research into ADHD with evidence-based information and supporting the efforts of its members throughout Europe, in an effort to combat ignorance, stigma and intolerance with regard to ADHD.
message from the president, Andrea Bilbow OBE
Over the past three years as President of ADHD Europe I have been fortunate enough to get on board with a number of interesting research projects and learning about the world of scientific research into ADHD and co existing conditions. Funding for research from the European commission is very much dependent on Research consortiums including the patient voice at every stage of the process, from developing the proposal, submitting the grant and playing a significant role throughout the project. Here is a list of projects which are really interesting for patients to learn about and for some of them I have been involved in ensuring our voice is heard, helping with disseminating outcomes, sitting on ethics advisory boards and helping to keep scientists firmly grounded so they can make the links between scientific investigations and outcomes for patients. Published October 2016
Many children with ADHD and conduct problems will display aggressive behaviours and for some the aggression may lead to social maladjustment and crime. Scientists are looking closely at the underlying mechanisms and subtypes of aggression. Scientists hope their findings will help open up possibilities for developing effective prevention and treatment strategies that will benefit vulnerable patients with paediatric conduct disorders.
The Aggressotype consortium is committed to make tangible contributions that lead to an improved quality of life for patients, their relatives and their social environment. We are closely collaborating with the Agressotype project to facilitate a fluent dialogue with the final beneficiaries of research and focus our efforts on advancing the rights of, and advocating on every level throughout Europe for people affected by ADHD and co-morbid conditions in order to help them reach their full potential. We attend the Aggressotype General Assembly meetings; are engaged in the Ethics and Dissemination Board; review clinical protocols to provide the patient’s perspective; and will help in disseminating the outputs of the project to the society.
Aggressotype researchers founded the ECNP Network ADHD across Lifespan. This network aims at connecting researchers across disciplines to work on ADHD etiology across the entire period of life, removing the artificial split often introduced by the seperation of child and adolescent psychiatry from adult psychiatry into seperate medical disciplines and clinics.
The MIND project
MIND (Mastering Skills in the training Network for ADHD and ASD)
A pan-European training network which aims to educate a new generation of researchers in the field of neurodevelopmental disorders, through innovation-oriented research combined with highly interdisciplinary and intersectoral international training. 15 young researcher will trained and will be undertaking research as part of a PhD programme. As part of their first training programme, a series of lectures across a two week seminar held in Bergen I was invited to present a talk about the effect of ADHD and ASD on families bringing the human aspect and the science together. In Berlin this year some of the young scientist presented some very interesting findings and hypothises at the Eunethydis conference. Please visit this website for some interesting information.
The CoCA project
The CoCA project will kick-off in March 2016 and run for 5 years. will look at the comorbid conditions with ADHD and trying to understand the mechanisms underlying them. CoCA will be looking at the most frequent psychiatric conditions ADHD, mood / anxiety and substance use disorders, and a highly prevalent somatic disease, obesity. 80% of adults with ADHD have a comorbid psychiatric problem and this will increase the burden of the condition.
“Our overarching goal is thus to deliver to professionals and society new knowledge and tools to prevent adolescent and young adult ADHD from escalating into detrimental comorbidities with mood and anxiety disorders, substance abuse, and obesity.”
CoCA, a new large international project on ADHD. Aggressotype researchers formed a consortium together with additional international colleagues from multiple disciplines, and also will again involve patient representatives from ADHD Europe. The CoCA consortium will investigate shared mechanisms underlying the early onset neurodevelopmental psychiatric disorder ADHD and frequent comorbid conditions to which this disorder can escalate throughout lifespan: mood and anxiety disorders, substance use disorders, and obesity. The research will involve integration of epidemiologic study designs, utilizing large population registries and well-phenotyped, already existing cohorts, basic molecular and cell-based research, as well as pilot trails of alternative, non-pharmacological treatment and secondary prevention approaches.
The Impact Group
International Multi-Centre persistent ADHD Collaboration is a consortium of clinical and basic researchers from several European countries and the USA and Brazil which coordinates biosamples and phenotypic information of over 4000 cases with persistent ADHD and over 8000 controls. The website is an interesting list of who’s who in the field of ADHD scientific research.
Funded by the European Union, the Attention Deficit Hyperactivity Disorder Drug Use Chronic Effect (ADDUCE) project started in November 2011. The ADDUCE consortium hosted experts in the field of ADHD, psychiatry, drug safety, neuropharmacology, cardiology across several European universities. The aim of the project was to investigate drug safety in the treatment of ADHD by studying the long term effects of MPH in individuals with ADHD. The project finalised on April 30, 2016.
In June this year members of the team presented their findings at an ADDISS conference held in Dundee in partnership with the Dundee and Angus ADHD Support Group.
The ADDUCE Logo was developed by Matthew, a 14-year old boy who has ADHD. Matthew won the logo-design competition, organized by ADDISS, patient organization, UK.