Prof. Richard Feltbower has been a member of several advisory boards since becoming involved with YSRCCYP, these include the National Cancer Intelligence Network Children Teenagers and Young Adults Site Specific Clinical Reference Group (2014-2019), the Children’s Cancer and Leukaemia Group (CCLG) Epidemiology and Registry Group (2010 onwards), National Cancer Research Institute Teenage and Young Adult Clinical Studies Group (2005 – 2013)
He also remains an active member of the National TYA Advisory Group. Together with his role as a member of the TYAC Research, Prof. Feltbower represents the register nationally as an exemplar of high quality epidemiological and applied health research.
There are plans to integrate STRONG-AYA data into the YSRCCYP database, enabling the linkage of retrospective and prospective patient reported outcome measures (PROMs), such as self-reported symptoms, social wellbeing, and functional status. This integration will enable the teams to examine and investigate the impact of these reported outcomes on survival and disease in our patient population.
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.
The registry research staff collaborate closely with colleagues from the Danish Cancer Survivorship research group (Dr Jeanette Winther, Dr Tina Anderston), where a comparative analysis is underway examining the risks of long-term effects of cancer treatment in the Yorkshire and Danish childhood cohorts.