West Midlands Regional Children's Tumour Registry
Research type
Research Database
IRAS ID
204132
Contact name
Helen Jenkinson
Contact email
Research summary
West Midland's Regional Children's Tumour Registry
REC name
London - South East Research Ethics Committee
REC reference
16/LO/1283
Date of REC Opinion
28 Sep 2016
REC opinion
Favourable Opinion
Data collection arrangements
Data relating to diagnosis , treatment and outcomes of children with cancer, which is essential to undertake epidemiological study of patterns and causes of childhood cancer, are collected and stored securely on a database held on the Birmingham Children's Hospital network servers. Data are processed by Registry staff who are fully trained in Information Governance matters and access is limited to a small number of authorised users of the data. No identifiable data are ever released except those with legitimate rights of access and who comply with the Registry's data release policy.
Research programme
Research, both instigated and supported by the West Midlands Regional Children's Tumour Registry over the past 30 years, has contributed to a wider understanding of childhood cancer within the West Midlands region (and continues to do so). Understanding incidence rates and trends together with the health and outcomes of survivors of childhood cancer has been essential to develop the clinical service within Birmingham Children's Hospital, the principal treatment centre for children with cancer in the West Midlands region, and to maximise survival and improve quality of life for young people. .
Research database title
West Midland's Regional Children's Tumour Registry
Establishment organisation
Birmingham Children's Hospital NHS Foundation Trust
Establishment organisation address
Steelhouse Lane
Birmingham
B4 6NH