Yorkshire Specialist Register of Cancer in Children and Young People

Aims and objectives

The Yorkshire Specialist Register of Cancer in Children and Young People exists primarily to underpin epidemiological research examining the patterns and causes of cancer in children and young people and to facilitate health services research describing the patient experience in the context of care received by health professionals. The YSRCCYP is an established information resource for local clinicians and commissioners, and forms the basis for national and international collaborative research.

The core aims of the YSRCCYP are to:

  • Maintain the accurate and complete collection of clinical and socio-demographic data on children, teenagers and young adults with cancer in Yorkshire, specifically information not otherwise available from other routine NHS sources.
  • Investigate the effectiveness of healthcare delivery for children and young people, specifically the impact on survival and long-term health.
  • Undertake epidemiological research, comprising incidence and survival analyses.
  • Describe environmental risk factors for childhood and young adult cancer.

During the current funding period (2017-2020), we aim to:

  • Maintain accrual of accurate and complete information that is not routinely held by other regional UK cancer registries;
  • Produce timely information on childhood and young adult cancer statistics (e.g. numbers newly diagnosed) which can be used by patients, families and NHS service planners to inform the delivery of care across the Yorkshire and Humber Strategic Health Authority (SHA);
  • Describe and understand why males and females have different survival rates and health problems.  
  • Work with colleagues from the Yorkshire Malignancy Research Network to identify factors that are linked to better survival for those with leukaemia and lymphoma.  
  • Find out whether the teenage and young adult multidisciplinary team service introduced in 2007 has improved survival and reduced the number of hospital admissions. 
  • Focus on brain tumours, investigating survival from aggressive tumours, describing neurological problems amongst survivors, and assessing differences in risk for south Asians and non-south Asians.
  • Determine whether survival for young people with osteosarcoma has improved over recent years and what hospital services they require.  
  • Through a new collaboration with physiotherapy services investigate rehabilitation support for those with brain and bone tumours.