Data Resource Profile: Yorkshire Specialist Register of Cancer in Children and Young People (Yorkshire Register)

The Yorkshire Register is an established population-based research database of tumours diagnosed in the childhood, adolescent and young-adult age ranges.1 Set up in 1984 to describe medium- and long-term outcomes for cancer survivors, it remains one of only three specialist databases in the UK covering the paediatric age range and the only one of its kind covering individuals diagnosed aged 25–29 years.

• The Yorkshire Register is held on an encrypted firewall protected secure platform at the University of Leeds. Individuals diagnosed with a malignant or benign central nervous system tumour aged 0–29 years whilst living in the area contiguous with the former Yorkshire and the Humber Strategic Health Authority3 are eligible for inclusion. Information has been collected for children diagnosed since 1974. Data accrual for 15- to 29-year-olds began in 1990.

• The Yorkshire Register collects data prospectively and currently contains information on 11 702 primary and secondary tumours. Data have been linked to various administrative health-related (Hospital Episode Statistics,4 National Cancer Registration and Analysis Service5) and non-health-related (National Pupil Database6) data sets.

• Personal and demographic information along with diagnostic and clinical data on treatment, death information and date last seen in follow-up clinics are available for all individuals.

• Other research teams (subject to review, with the appropriate ethical and information governance approvals7) can use the data held in the Yorkshire Register for the purposes of further research.