Latest research demonstrates value and validity of UK-wide autism cohort database
New research published in the BMJ today confirms that families who participate in research via the UK's national autism family research database are representative of UK families of children with autism spectrum disorder (ASD) overall. This makes the database a valuable foundation on which to build autism research capacity in the UK. The ASD-UK database at Newcastle University, funded by Autistica, the UK's leading autism research charity, now includes over 1700 families.
Autism researchers often find recruitment to studies challenging, despite more than 80% of families expressing interest in participating in research. As a result, many studies recruit biased samples of participants, at a slower than expected rate, limiting the pace of research and potentially costing research funders more money.
In response to these challenges, Autistica and Newcastle University launched the national Autism Spectrum Database-UK (ASD-UK) in 2011. This was built on the success of Daslne, a regional database of children with ASD in the North East, also funded by Autistica, which to date has registered 1400 children and supported recruitment to 37 studies. The two databases co-ordinate closely and families join one or the other depending on where they live. Thus, researchers can recruit to their studies from over 3000 families currently.
ASD-UK aims to include large numbers of children with ASD and their families, enabling researchers to have faster, better access to potential research participants and allowing families to participate more easily in autism science.
The BMJ Open report published today shows that 1000 families were registered with ASD-UK in 30 months, recruited through 50 UK child health teams and self-referral. Children of families who participated were compared to 208 families who chose not to, and were found to be very similar on gender ratio, year of birth, ASD diagnosis and social deprivation score. The reliability of parent-reported ASD diagnoses of children was very high when compared with clinical reports (over 96%); no database child without ASD was identified. A comparison of gender, ASD diagnosis, age at diagnosis, school placement, learning disability and deprivation score of children and families from ASD-UK with 1084 children and families from Daslne and families from population studies showed that ASD-UK families are representative of families of children with ASD overall.
Lead researcher at Newcastle University, Jeremy Parr, commented on the findings:
"Our partnerships between health and education professionals have been key to the success of ASD-UK, helping us recruit from a broad mix of families who are representative of the diverse autism spectrum. The materials we developed with parents to clearly explain the role of the database have also helped us to recruit families that may have otherwise felt unable to access alienated by research. We now have over 3000 families registered for research so there is enormous potential to increase the quality and quantity of autism studies in the UK."
Autistica's CEO Jon Spiers commented:
"We are proud to be funding the team at Newcastle to develop and grow the ASD-UK family database. It's clear that investment in underpinning projects like this database are fundamental to maintaining the UK's position as a leading location for autism science. This research highlights in particular the importance of a multidisciplinary, collaborative approach in bridging the gap between researchers and families. We look forward to the results of high quality studies using the database that are in the pipeline for publication later this year."
More information:
Contact: Rebecca Sterry, Communications Manager, Autistica.
Rebecca.sterry@autistica.org.uk T) 056 011 88981 M) 07716 426896
Dr Jeremy Parr, Clinical Senior Lecturer and Consultant, Paediatric Neurodisability. University of Newcastle.
Jeremy.Parr@ncl.ac.uk T) 0191 282 5966
NOTES TO EDITORS:
Full copy of the report in BMJ Open:
F Warnell, B George, H McConachie, M Johnson, R Hardy, J R Parr. Designing and recruiting to UK autism spectrum disorder research databases: do they include representative children with valid ASD diagnoses?
Autistica both funds and campaigns for medical research to understand the causes of autism, improve diagnosis, and develop new treatments and interventions, acting as the bridge between people with autism and researchers. Since being founded in 2004, Autistica has raised over £9 million in support of autism research.
ASD-UK is funded by Autistica and led by Dr Jeremy Parr and Professor Helen McConachie at the Institute of Neuroscience at Newcastle University. The Autism Spectrum-UK homepage lists the other ASD research database for adults and the aforementioned Daslne database.
ASD-UK is the only database of its kind in the UK. In the USA, the Interactive Autism Network (IAN) includes families who have a child with a clinical ASD diagnosis and includes over 45,000 people with ASD, and has supported over 300 research studies. However, the representativeness of IAN families compared with families of people with ASD generally is unknown. There is also a Canadian-American Research Consortium (ASD-CARC), and one based in Western Australia (WA).
Provided by Autistica
