Genetic Testing in a Community Learning Disability Team
Research type
Research Study
Full title
Evaluation of the clinical impact of genetic testing in a community learning disability team
IRAS ID
362276
Contact name
Sarah E. Pape
Contact email
Sponsor organisation
Oxleas NHS Foundation Trust
Duration of Study in the UK
0 years, 8 months, 1 days
Research summary
There are approximately 1.3 million people in England who have a learning disability. In recent years there have been huge advances in our understanding of how some learning disabilities are caused by genetic changes. Identifying genetic conditions can also help us to understand how learning disabilities can be linked to other physical and mental health conditions, and how these conditions may progress and change over time. This is important when predicting the risk of people developing other problems and making treatment plans.
Comprehensive genetic testing is a relatively new resource in the NHS and its usefulness and relevance for adults with learning disabilities in the community has not been well evaluated. We therefore aim to collate information from patients within an NHS community team which provides mental health and epilepsy support for people with learning disabilities. All patients seen by the community team between 2020-2025 who underwent genetic testing will be included in the study. Information to be collected includes basic demographics (age, sex, ethnicity), clinical diagnoses, indications for genetic testing, length of time to complete testing, testing outcomes, and genetic results.
REC name
Yorkshire & The Humber - Bradford Leeds Research Ethics Committee
REC reference
26/YH/0053
Date of REC Opinion
2 Mar 2026
REC opinion
Favourable Opinion