A Register for New Anti-Epileptic Drugs In ID/PDD populations
Research type
Research Database
IRAS ID
160521
Contact name
Jon Allard
Contact email
Research summary
A register for collecting and measuring outcomes of licensed Anti-Epileptic drugs (AEDs) in patients with Epilepsy and Intellectual Disability (ID) and/or Pervasive Developmental Disorders(PDD)
REC name
South Central - Oxford C Research Ethics Committee
REC reference
14/SC/1270
Date of REC Opinion
29 Oct 2014
REC opinion
Further Information Favourable Opinion
Data collection arrangements
Data will be collected using RIO by the
researcher. The data will be made up of 17 parameters and stored on an excel spreadsheet which will be encrypted
and password protected.
The parameters are to include the following: age, sex, type of ID (mild/moderate/severe/profound/unavailable), ID data
(from casenotes/
IQ test), details of pervasive development disorder (such as autism), chronic medical condition
(nature of and diagnosis), seizure type (generalized, complex partial, partial), seizure frequency, seizure intensity, age
of onset (first seizure), AED medication, midazolam/diazepan (for rescue), QOL score (radar score/impact scale).
Research programme/community supported by the databaseResearch programme
This project would help identify and clarify the role of newer AEDs 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 AED. It would increase scientific awareness in AED prescribing.
Research database title
A register for collecting and measuring outcomes of licensed Anti-Epileptic drugs (AEDs) in patients with Epilepsy and Intellectual Disability (ID) and/or Pervasive Developmental Disorders(PDD)
Establishment organisation
Cornwall Partnership NHS Foundation Trust
Establishment organisation address
Trengweath
Penryn Street
Redruth
TR15 2SP