Condition: Epilepsy · Intellectual Disability · Learning Disability · Sponsor: University of Plymouth
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 (PwID) and epilepsy, collected from three NHS sites across England and Wales. Researchers will gather information from participants' medical records, including clinical details, epilepsy history, and medications, and will enter this data into a secure database where all identifying details are removed. This part of the study aims to determine whether it's possible to identify eligible participants, collect complete datasets for each participant, and identify any issues that may affect the quantity and quality of data. These findings will help inform a potential future study that could involve 20 or more sites. Part Two: Research Register The goal of this part is to create a research register of individuals with PwID and epilepsy. Participants will be approached and asked for their consent to collect their personal and clinical data, which will help identify those willing to take part in future ethically approved research projects. As in Part One, researchers will collect data from medical records. Participants who consent to be included in the register may be contacted by external researchers for future studies. The aim is to facilitate national collaboration by enabling data sharing between research projects, thereby improving the ability to answer more questions and enhance …
This description comes directly from the study's public registry record.
Rohit Shankar · +44 (0) 1752 439831 · rohit.shankar@plymouth.ac.uk
Emily Stanyard · +44 (0) 1752 439831 · emily.stanyard@plymouth.ac.uk
Always discuss trial participation with your own doctor first.
| Cornwall Partnership NHS Foundation Trust | Bodmin, United Kingdom | Recruiting |
| Royal Free London Hospitals NHS Trust | London, United Kingdom | Not Yet Recruiting |
| Swansea Bay University Health Board | Swansea, United Kingdom | Recruiting |
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Source record: clinicaltrials.gov/study/NCT06780501