Centre for Neuropsychiatric Genetics and Genomics

All Wales Neurodevelopmental Disorder e-cohort

Children with neurodevelopmental disorders such as attention deficit hyperactivity disorder (ADHD) and autism spectrum disorders (ASD) are at increased risk of developing additional mental health problems in early adulthood and using health services more.

The reasons for this are unknown, with little research on this topic. One major barrier to research in this area is that tracking children with neurodevelopmental disorders into early adulthood is very difficult as they are often poor attenders of outpatient services.

Studies following individuals by looking at patient data from routinely collected GP records offer an attractive solution.

Research approach

The Wales-based Secure Anonymous Information Linkage (SAIL) databank anonymously collates routinely collected data from the NHS, Government and schools for almost everyone in Wales.

Using this anonymised data, we have identified all cases of ADHD and ASD in Wales. We can now electronically track outcomes using routine data from this population dataset to identify predictors of poor outcomes.

We also previously collected a sample of children with ADHD as part of the Study of ADHD Genes and Environment (SAGE study). We have invited these individuals into the data-linkage study and can electronically track their outcomes. Because we already have so much information about them, they’re an ideal group to see what predicts later outcomes and inform analyses in the larger population dataset.

Having created these unique datasets, we can expand our investigation into the early predictors of poor outcome for those diagnosed with Neurodevelopmental Disorders.

This project is funded by the ISSF3 Population Research Wellcome Trust award.