Connecting families, enabling research, improving lives.
ASD-UK is a national research family database for children with an autism spectrum disorder (ASD), based at Newcastle University and funded by Autistica. We bring together families, clinicians, and researchers across the UK to build the large-scale evidence base needed to drive meaningful advances in the care and treatment of children with ASD.
What We Do
Meaningful progress in autism research depends on scale. Studies into the causes of ASD, the effectiveness of interventions, and the best ways to deliver healthcare for children and their families all require large numbers of participants — more than any single clinic or region can provide alone.
ASD-UK solves this by collecting accurate, structured data about children with ASD and their families across the UK. This enables large studies to be undertaken, helps researchers identify and recruit suitable families, and gives parents a direct route into research that could shape the future of autism care.
For Families
Most families of children with ASD currently have little or no opportunity to participate in research. ASD-UK changes that. By joining the database, parents can:
- Take part in research studies that may improve the care and treatment of children with ASD, both now and in the future
- Contribute to important questions about autism being addressed at a national scale
- Stay informed by accessing research findings
Participation is straightforward, and all applications to recruit families are independently reviewed by our Steering Committee before any approach is made.
Please note: this database is a research resource only. It is not intended for the diagnosis or treatment of medical conditions.
For Researchers
ASD-UK provides a rigorous, ethically governed pathway for recruiting families to ASD studies. Researchers wishing to use the database must submit an application to the ASD-UK Steering Committee for review and assessment. This ensures that only studies of genuine scientific merit and ethical standing are supported.
Our Team
ASD-UK is led by a multidisciplinary team based at Newcastle University.
- Jeremy Parr — Project Lead. A consultant paediatrician in Newcastle, Jeremy sees children and young people with ASD in clinics, leads diagnoses, and collaborates with ASD researchers in the UK and internationally. His research spans the causes of ASD, the effectiveness of interventions, and the design of health services for children and families.
- Helen McConachie — Professor of Child Clinical Psychology, Newcastle University. Helen also leads a related regional database (DASLNE) in North East England. Her research focuses on the effectiveness of interventions for children with ASD and on how best to measure children’s progress and outcomes.
- Denise Brett — Co-ordinator. A psychology graduate who joined ASD-UK in 2014, Denise has worked as a research assistant at Newcastle University on interventions for managing repetitive behaviours in ASD, and has experience as a tutor for children and adolescents with ASD.
- Richard Hardy — IT and Database Officer, Newcastle University. Richard developed the ASD-UK database and the online registration system.
- Jane Tilbrook — Administrator for the Development and Disability team at Newcastle University and Research Applications Administrator for ASD-UK.
- Sarah Nolan — ASD-UK Administrator, Newcastle University, also working across child health research projects including a major study on the transition of young people with complex health needs.
Governance
ASD-UK is overseen by an independent Steering Committee, which decides which studies the database will support. The committee brings together health professionals, the ASD-UK research team, and three parent representatives — ensuring that family perspectives are central to all decisions.
Steering Committee members: Dr Doug Simkiss (Chair), Jeremy Parr (ASD-UK Lead), Helen McConachie (DASLNE Lead), Deborah Garland (parent and National Autistic Society lead for the North East), Mr Mark Wakenshaw (parent), Ms Louise Relton (parent), Professor Charles Newton (University of Oxford), Professor Louise Gallagher (University of Dublin), Dr Simon Wallace (Autistica), Jane Tilbrook (Administrator).
NHS Trust Partners
ASD-UK operates in partnership with NHS Trusts across England, Scotland, Wales, and Northern Ireland — spanning major centres including Great Ormond Street Hospital for Children, Guy’s & St Thomas’ NHS Foundation Trust, Sheffield Children’s NHS Foundation Trust, and Alder Hey Children’s NHS Foundation Trust, among many others.
This national network of over 60 participating Trusts gives ASD-UK its unique reach and makes genuinely large-scale autism research possible.
Funded By
ASD-UK is funded by Autistica (autistica.org.uk), a UK charity committed to ensuring that greater scientific understanding of autism translates into real improvements in the lives of individuals with ASD and their families.