Neuropsychiatric research databases for people with intellectual disabilities and epilepsy (REFINE): a feasibility study protocol.

ABSTRACT:

Introduction

This project explores the feasibility of setting up a neuropsychiatric de-identified database (DiD) and a Research Register (RR) to collect, analyse, monitor and systematically report clinical data for people with intellectual disabilities (PwIDs) and epilepsy.

Methods and analysis

A multicentre project designed to collect de-identified data from clinical records at three adult ID specialist services in England and Wales and to develop an RR of PwID and epilepsy. Patients added to the DiD will be identified from patient clinic lists, clinic letters, in-house databases and electronic systems. Patients to be added to the RR will also be identified through attendance for regular review at clinic appointments. The collected data will be entered into the Research Ele

SUBMITTER: Musicha C 

PROVIDER: S-EPMC12658526 | biostudies-literature | 2025 Nov

REPOSITORIES: biostudies-literature