Status:
RECRUITING
Neuropsychiatric Research Databases for People With Intellectual Disabilities and Epilepsy (REFINE)
Lead Sponsor:
University of Plymouth
Conditions:
Epilepsy
Intellectual Disability
Eligibility:
All Genders
18+ years
Brief Summary
This study consists of two parts: Part One: De-identified Database The goal of this part is to establish a research database containing de-identified data about People with Intellectual Disabilities...
Eligibility Criteria
Inclusion
- The de-identified database:
- Clinical diagnosis of ID in medical records.
- Clinical diagnosis of epilepsy in medical records.
- Patient is over the age of 18 years old.
- Under the current care of specialist ID or epilepsy services at one of the three participating NHS Trusts.
Exclusion
- Other neurodevelopmental disorders without ID.
- Patient is recorded on the National Data Opt-out as not wishing their data to be used for research/audit.
- The research register:
- Inclusion Criteria:
- Clinical diagnosis of ID in medical records.
- Clinical diagnosis of epilepsy in medical records.
- Under the current care of specialist ID or epilepsy services at one of the three participating NHS Trusts.
- Between the ages of 18 and 30 at the time of consent.
- Participant has the capacity to be able to provide consent for themselves, or a personal consultee is able to provide an opinion on the views and feelings of the potential participant.
- Patients (or personal consultee) must be able to communicate in English (or Welsh in Welsh site).
Key Trial Info
Start Date :
September 12 2024
Trial Type :
OBSERVATIONAL
Allocation :
ESTIMATED
End Date :
May 31 2025
Estimated Enrollment :
600 Patients enrolled
Trial Details
Trial ID
NCT06780501
Start Date
September 12 2024
End Date
May 31 2025
Last Update
January 17 2025
Active Locations (3)
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1
Cornwall Partnership NHS Foundation Trust
Bodmin, United Kingdom
2
Royal Free London Hospitals NHS Trust
London, United Kingdom
3
Swansea Bay University Health Board
Swansea, United Kingdom