Childhood Epileptic Encephalopathies Database
Research type
Research Database
IRAS ID
214168
Contact name
SAMEER ZUBERI
Contact email
Research summary
Childhood Epileptic Encephalopathies Database
REC name
West of Scotland REC 4
REC reference
16/WS/0203
Date of REC Opinion
23 Jan 2017
REC opinion
Further Information Favourable Opinion
Data collection arrangements
As part of routine clinical practice our centre performs the genetic testing for a number of childhood epileptic encephalopathies for individuals throughout the UK. From referring clinicians throughout the UK we receive a standardised referral form detailing the clinical details of the epilepsy type, for example the types of seizures, age at seizure onset and details of EEG recordings. The referral form is accompanied by a DNA sample that is analysed as part of routine clinical practice in the Genetics Laboratory at the Royal Hospital for Children in Glasgow. We offer a joint clinical and molecular genetic opinion based on the referral data and the genetic testing. The database will holds anonymised patient data including details of the epilepsy and details of the genetic variant found.
All individuals are identified as part of routine clinical practice and the principle investigator takes responsibility to anonymise all information entered in the database. The database is held on a password protected and encrypted computer which is backed up onto the Royal Hospital for Children's secure server. The cross reference between study number and patient identifier will be held in a separate file on the main investigators password protected and encrypted computer
Research programme
This is a database of childhood epileptic encephalopathies which by definition includes children with onset of epilepsy from birth to 16. The vast majority of these children will be in the infantile onset group of less than 2 years of age. This is when many highly refractory epilepsies present.
Research database title
Childhood Epileptic Encephalopathies Database
Establishment organisation
NHS GG&C
Establishment organisation address
ROYAL HOSPITAL FOR CHILDREN
1345 GOVAN ROAD
GLASGOW
G51 4TF