The primary objectives of this research programme are to:
- Perform world-leading epidemiological research examining the patterns and causes of cancer in children and young people.
- Undertake applied health services research generating novel insights into cancer outcomes.
- Provide world-leading outputs relevant to childhood and young adult patients, survivors, and families.
The work of the Register falls into three main areas, the aims of which are
- To investigate the causes of cancers in children and young people through comprehensive epidemiological and molecular analyses describing patterns of cancer incidence. This includes investigations of the effects of environmental factors and population characteristics such as deprivation, ethnicity and other socio-demographic variables that might explain any differences in incidence rates. The timing of exposure to these potential causal factors, which may influence the onset of disease, is considered from the time of conception up to diagnosis.
- To investigate the delivery of care to young people with cancer in Yorkshire to ensure the best treatment is available; for example by looking at pathways of care and factors that might influence survival and minimise long-term complications.
- To help inform the planning of cancer services for young people in the Yorkshire Region and to provide clinicians with relevant and timely information about their patients.
In order to achieve the above aims the Register needs
- To continue to collect complete, accurate and timely population-based data on children and young people diagnosed with malignant and benign disease whilst resident in the Yorkshire and the Humber region.
- To continue to monitor the cohort through follow-up of all patients, ascertained through notifications from data held on the National Cancer Registration and Analysis Service (NCRAS). This enables us to carry out relevant survival analyses.
- To make use of other routine health related databases such as Hospital Episode Statistics, primary care data and hospital data from long term follow-up clinics to facilitate research into health care pathways pre and post cancer diagnosis and describe the prevalence of late health effects of treatment.
- To make use of other non-health related datasets to examine social outcomes following childhood and young adult cancer. Examples of social outcomes will include a) educational performance derived from the National Pupil Database, Individual Learner Record and Higher Education Statistics Authority; b) employment and welfare support information through the Department for Work and Pensions.
- To provide an information service for local clinicians and health care professionals to advocate the use of the Register in health services research projects across Yorkshire.