(duplicate) (duplicate) A Register for Anti-Epileptic Drugs In ID/PDD
Research type
Research Database
IRAS ID
345110
Contact name
Rohit Shankar
Contact email
Research summary
A register for collecting and measuring outcomes of licensed Anti-Epileptic drugs & epilepsy treatments in patients with Epilepsy and Intellectual Disability and/or Pervasive Developmental Disorders
REC name
South Central - Oxford C Research Ethics Committee
REC reference
24/SC/0221
Date of REC Opinion
9 Oct 2024
REC opinion
Further Information Favourable Opinion
Data collection arrangements
Updated Summary (also attached with application)
In 2014 we received ethical approval to develop a research database register for individuals with an intellectual disability (ID) and/or Pervasive Developmental Disorders (PDD) taking anti-epileptic drugs (AEDs). The purpose of this register is to ascertain the safety of anti-epileptic drugs and treatments. Individuals with an ID and/or PDD (such as Autism) tend to have various co-morbidities and as a result can respond differently to medications when compared with the general population. At the time no method existed for safely and effectively examining the safety of new and existing medications in this vulnerable population. Between 2014 and 2024 five AEDs were studied.
The research database collects data which already exists in NHS patients’ records. Data from individuals with epilepsy and ID and/or PDD and data from individuals with epilepsy who do not, are compared. This provides valuable information to inform understanding as to whether individuals with ID and/or PDD respond differently. This in turn may inform future treatment guidance. Where an AED or treatment is prescribed for a specific ID population/s then data is collected and analysed in isolation
NHS patients are asked to consent to confidential and anonymous data being collected from their medical records and shared with the database register research team
Research programme
This project would help identify and clarify the role of newer AEDs (and epilepsy treatments) in patients with ID/PDD. Given the lack of available clinical evidence in this area it is paramount that this research happens. It would benefit all patients with epilepsy and ID. It would increase scientific awareness in AED prescribing.
Research database title
A register for collecting and measuring outcomes of licensed Anti-Epileptic drugs & epilepsy treatments in patients with Epilepsy and Intellectual Disability and/or Pervasive Developmental Disorders
Establishment organisation
Cornwall Partnership NHS Foundation Trust
Establishment organisation address
Fairview House,
Corporation Road, Bodmin
PL31 1FB