Building Research Databases and a Register for Adults With Intellectual Disabilities and Epilepsy in NHS Sites Across England and Wales

What this Trial Is About

Researchers are conducting an observational study to develop research databases focused on people with intellectual disabilities ID and epilepsy. The study has two parts first, creating a de-identified database from medical records collected at three NHS sites in England and Wales to assess the feasibility of data collection and quality. Second, establishing a research register of individuals with ID and epilepsy who consent to provide personal and clinical data for future ethically approved research projects, facilitating national collaboration and data sharing. The first part involves gathering clinical details, epilepsy history, and medications from participants medical records, removing all identifying information before entering the data into a secure database. The second part invites participants to provide consent to be included in a research register, enabling contact about future studies and evaluating recruitment processes, screening rates, and data completeness. Both parts aim to assess feasibility at the participating sites and develop formal procedures for data access and participant identification. Participants will have their medical records reviewed to collect clinical and epilepsy-related data. For the research register, participants or their personal consultees must provide consent and communicate in English or Welsh. Researchers will monitor recruitment and screening efficiency, data completeness, and feedback on challenges with data collection. The study will conclude in May 2025, reviewing the establishment of both the de-identified database and the research register to support future research efforts in this population.

Neuropsychiatric Research Databases for People With Intellectual Disabilities and Epilepsy (REFINE)