A regional asset for Yorkshire and Humber Data, a population-based database of all children and young people (0–29 years) diagnosed with cancer residing in the Yorkshire and Humber region in England (10,000 tumour registrations in children aged 0-14 years since 1974 and Adolescents and Young Adults aged 15-29 years since 1990). The database contains detailed information on clinical prognostic factors including detailed treatment and stage information. A unique quality of the Yorkshire Register is that it has pre-linked data with hospital admissions datasets including inpatient, outpatient, A&E, Mental Health HES which has been used to explore long-term morbidity in the cohort. Primary care linked data have been requested and are pending. Linked educational attainment and unemployment/social benefits data are currently being sought (ethical approval in place). Demand is largely underpinned by ongoing epidemiological and cancer outcomes requests from University postgraduate researchers, PGT students, and other children’s tumour registers. However, pharma has also requested some of the registry data. Ethics and Research Governance are all current, the former approved as a Research Database by the Northern & Yorkshire MREC (Ref MREC 0/3/1) from which data can be requested by external researchers, and approval from the Health Research Authority Confidentiality Advisory Group to process identifiable patient data without consent (Ref—CAG 1-07(b)/2014). The Register goes beyond the dataset held by NCRAS in having much more rich and detailed treatment histories of every patient through active follow-up so beyond the traditional 6-month window since diagnosis used by NCRAS, as well as more complete tumour staging information. Register also records any cancer recurrence alongside any subsequent treatment received.

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.

Example of three recent research studies by the Yorkshire Register research team are as follows:

1. Respiratory morbidity in young people surviving cancer: Population based study of hospital admissions, treatment related risk factors and subsequent mortality (Smith et al, 2019)

Respiratory diseases are a major cause of late morbidity and mortality amongst childhood cancer survivors. This population-based study provides comprehensive analysis of hospitalisations for respiratory conditions, the associated risks of admission by earlier cancer treatment and trends in readmissions and subsequent mortality in long-term survivors of cancers diagnosed under 30 years. The risk of hospitalisation was significantly higher in cancer survivors compared to the general population. Treatment with chemotherapy with known lung toxicity was associated with an increased risk of admissions for all respiratory disease especially pneumonia. Subsequent mortality was highest in those admitted for pneumonia compared to other respiratory conditions.

2. Long term survival after childhood acute lymphoblastic leukaemia: population-based trends in cure and relapse by clinical characteristics (Smith et al, 2018)

Statistical “cure models” provide additional metrics useful to identify and describe trends in survival. Additional measures include the proportion cured which is a summary of the long term survival and the median survival of the uncured which give information on those who are not long-term survivors. In this study we used a statistical cure model to explore trends in long-term survival and relapse for childhood acute lymphoblastic leukaemia (ALL) over time and by clinical characteristics. The proportion of patients cured, defined either by overall survival or relapse free survival, has increased over time while there was slight decrease in the median survival time of the uncured. We also observed a significant reduction in the risk of relapse over time.

3. Comparison of ethnic group classification using naming analysis and routinely collected data (Smith et al, 2017)

In this study we compared cancer incidence trends using different methods for assigning ethnic groups to individuals: 1 – using ethnic group recorded in hospital medical records, 2 – using a naming software program to assign an ethnic group based on the ethnic origins of the individuals and 3 – using a combination of both processes. We found that using different methods of assigning ethnicity can result in different estimates of ethnic variation in cancer incidence. Combining ethnicity from multiple sources results in a more complete estimate of ethnicity than the use of one single source.

https://medicinehealth.leeds.ac.uk/leeds-institute-cardiovascular-metabolic-medicine/doc/yorkshire-specialist-register-cancer-children-young-people