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NCT06780501: REFINE
Neuropsychiatric Research Databases for People With Intellectual Disabilities and Epilepsy (REFINE)
trial in Epilepsy in 600 participants. Currently enrolling.
31 May 2025
Quick facts
| Lead sponsor | University of Plymouth |
|---|---|
| Status | Recruiting now |
| Study type | OBSERVATIONAL |
| Enrollment | 600 |
| Start date | 12 September 2024 |
| Primary completion | 31 May 2025 |
| Estimated completion | 31 May 2025 |
| Sites | 3 locations across United Kingdom |
Conditions studied
- Epilepsy — all drugs for Epilepsy →
- Intellectual Disability — all drugs for Intellectual Disability →
- Learning Disability — all drugs for Learning Disability →
Sponsor
University of Plymouth
Who can join
18 and older, any sex, with Epilepsy or Intellectual Disability. Patients with the condition only — healthy volunteers not accepted.
Sponsor's own description
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 patient care. This part of the study will test whether it's possible to determine screening and recruitment rates at each site, develop and evaluate recruitment processes, and assess how researchers leading other approved studies can obtain permission to use the register. Additionally, it will evaluate whether it's possible to collect a complete dataset for each participant.
Publications & conference data
1 peer-reviewed publication reference this trial (live from Europe PMC):
-
Neuropsychiatric research databases for people with intellectual disabilities and epilepsy (REFINE): a feasibility study protocol.
Musicha C, Neilens H, Stanyard E, Allgar V, et al · · 2025 · PMID 41298255 · DOI 10.1136/bmjopen-2025-108869
Verify or expand the search:
- PubMed search for NCT06780501
- Europe PMC full search
- ASCO Meeting Library
- ESMO Meeting Library
- bioRxiv preprints
- medRxiv preprints
- Google Scholar
Related trials
Other recruiting trials for Epilepsy
Currently open trials in the same condition.
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- NCT07417280 — LIFUS For Neurological Disorders · NA · recruiting
- NCT07490769 — Levetiracetam Three Times Daily in Epilepsy · Phase 3 · recruiting
Other University of Plymouth trials
Trials by the same sponsor.
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- NCT06894966 — Towards a Targeted Ultrasound Neuromodulation Intervention for Alcohol Abuse Disorders · NA · not yet recruiting
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Verify against primary sources
- ClinicalTrials.gov — authoritative US registry record
- WHO ICTRP — international registry index
- EU Clinical Trials Register
- Sponsor press releases (Google)
- Trial protocol + status: ClinicalTrials.gov NCT06780501 (US National Library of Medicine, public domain)
- Publications: Europe PMC API search by NCT ID, retrieved 9 June 2026
- Drug + disease cross-links: matched in real time against Drug Landscape's normalised drug + company + condition tables
- Sponsor: as reported to ClinicalTrials.gov by University of Plymouth
- Last refreshed: 17 January 2025
Drug Landscape aggregates and links these public records for informational use only. Always verify against the primary source before clinical or regulatory decisions. Canonical URL: https://druglandscape.com/trial/NCT06780501.
Primary sources · FDA · ClinicalTrials.gov · EMA · SEC EDGAR · ChEMBL · Wikidata · full sourcing