National and International Collaboration

Prof. Feltbower was appointed to the National Cancer Intelligence Network Children Teenagers and Young Adults Site Specific Clinical Reference Group in May 2013 where he provides a key role in representing the UK specialist tumour registries. He is the current chair of the Children’s Cancer and Leukaemia Group (CCLG) Epidemiology and Registry Group. He was a member of the National Cancer Research Institute Teenage and Young Adult Clinical Studies Group from 2005-2013 which oversaw the establishment of the national TYA registry function at the North West Cancer Intelligence Network. He also remains an active member of the National TYA Advisory Group. Together with his role as a member of the TYAC Research and Registration professional group and the CCLG Epidemiology and Registry Group, Prof. Feltbower represents the register nationally as an exemplar of high quality epidemiological and applied health research.

Data linkage work from the YSRCCYP was cited by the US Agency for Healthcare Research and Quality as an example of how disease registries can help to evaluate patient outcomes using routine health datasets. The full entry appears in the second edition of the handbook, ‘Registries for Evaluating Patient Outcomes: A User’s Guide’.

Ongoing collaborations continue with the Northern Region Young Person’s Malignant Disease Register held at the University of Newcastle, c/o Dr Richard McNally. Prof. Feltbower is an Honorary Research Fellow at Newcastle, and named collaborator on studies evaluating the epidemiology of bone cancers in children and young people and survival following relapse after diagnosis of advanced neuroblastoma.

Further collaborative multi-centre studies include the Childhood Leukaemia International Consortium (CLIC) in collaboration with Professor Jill Birch and the International Consortium for the Epidemiology of Childhood Brain Tumors, an international case-control study on aetiological factors for childhood CNS tumours in collaboration with Professor Jill Birch and Dr Michael Scheurer.

The registry research staff collaborate closely with colleagues from the Danish Cancer Survivorship research group (Dr Jeannette Winther, Dr Tina Andersen), where a comparative analysis is underway examining the risks of long-term effects of cancer treatment in the Yorkshire and Danish childhood cohorts.