REFINE
Research type
Research Database
IRAS ID
335539
Contact name
Rohit Shankar
Contact email
Research summary
Neuropsychiatric research databases for people with intellectual disabilities and epilepsy.
REC name
North West - Haydock Research Ethics Committee
REC reference
24/NW/0210
Date of REC Opinion
18 Jul 2024
REC opinion
Further Information Favourable Opinion
Data collection arrangements
The primary objective of database 1 (the de-identified database) is to set up a research database consisting of de-identified data focused on People with Intellectual Disabilities (PwID) and epilepsy at three UK NHS sites across England and Wales.
The primary objective of database 2 (the research register) is to develop a research register of PwID and epilepsy. PwID and epilepsy will be approached and consented to the collection of their personal and clinical data, which will enable the identification of patients willing to take part in other ethically approved research projects.
The data will initially be collected at 3 collaborating sites and stored on databases held at the University of Plymouth's Peninsula Clinical Trials Unit.
Research programme
People with intellectual disability and epilepsy. Funded by Jazz Pharmaceuticals.
Research database title
Neuropsychiatric research databases for people with intellectual disabilities and epilepsy.
Establishment organisation
University of Plymouth
Establishment organisation address
Drake Circus
Plymouth
PL4 8AA