European Diffuse Intrinsic Pontine Glioma Registry
Research type
Research Database
IRAS ID
238175
Contact name
Simon Bailey
Contact email
Research summary
SIOPE DIPG Registry
REC name
Wales REC 5
REC reference
18/WA/0071
Date of REC Opinion
23 Feb 2018
REC opinion
Favourable Opinion
Data collection arrangements
Anonymised clinical (presentation, length of symptoms, outcome) and treatment data as well as anonymised MRI scans will be entered by clinicians in UK treatment centres after gaining informed consent. This is a secure on line database. Oversight will be provided by Professor Bailey as UK CI and a member of the European executive committee and the UK data custodian is M Ashley Gamble of the CCLG.
Research programme
The database is a European resource for researchers of Diffuse Intrinsic Pontine Glioma, the most devastating paediatric cancer. Any researchers who wish to access the data will apply to the registry where the application will be scrutinised by the Executive committee which is formed by experts in DIPG from a number of European countries.
Research database title
SIOPE DIPG Registry
Establishment organisation
DCOG Trial and Data Center
Establishment organisation address
Zinkwerf 5-7
EC The Hague
2544