Yorkshire Specialist Register of Cancer in Young People(Renewal-Oct25)
Research type
Research Database
IRAS ID
365046
Contact name
Richard G Feltbower
Contact email
Research summary
Yorkshire Specialist Register of Cancer in Children and Young People
REC name
North East - York Research Ethics Committee
REC reference
26/NE/0002
Date of REC Opinion
21 Jan 2026
REC opinion
Favourable Opinion
Data collection arrangements
The data comprises personal and demographic information (e.g. name, date of birth, address, postcode) along with diagnostic and clinical data on treatment (chemotherapy, radiotherapy, surgery). A field also identifies whether patients received any specialist care within a Principal Treatment Centre to evaluate the impact on survival and quality of life. Copies of diagnostic pathology reports, cytogenetic and molecular genetic diagnostics are retained to provide comprehensive information on diagnosis and facilitate future research should diagnostic classifications change over time.
Data are stored on a secure cloud-based Trusted Research Environment based on the ARO platform.
Data are ingressed into the ARO TRE through secure, electronic feeds of information from local patient management and pathology systems (including PPM within NHS Trusts across Yorkshire), the NDRS, as well as primary care datasets. Where essential data on cancer diagnosis and treatment are missing or incomplete from the electronic data sources, we manually abstract information from local hospital notes and patient management systems.
Research programme
The Yorkshire Specialist Register of Cancer in Children and Young People is an established population-based register of tumours diagnosed in the childhood, adolescent and young adult age ranges. The Register currently contains information on 13,000 young people diagnosed with cancer and benign tumours while living in Yorkshire. Data on children under 15 years has been collected since 1974, whilst data accrual for 15-39 year olds began in 1990. The primary aim of the Register is to investigate the causes of cancer through the application of epidemiological analyses. This includes monitoring time trends and investigating geographical patterns of disease across the region. Secondly, our aim is to investigate the delivery of care to young people with cancer in Yorkshire to ensure the best treatment is available and to minimise long-term health and social effects; for example by looking at pathways of care, factors that influence survival and minimise long-term complications. The Register data are also available to ensure optimum planning of cancer services for children and young people in the region and to provide clinicians with an information service on their patients. To undertake this, the Register will continue to collect complete and accurate information on a prospective basis.
Research database title
Yorkshire Specialist Register of Cancer in Children and Young People
Establishment organisation
University of Leeds
Establishment organisation address
Woodhouse Lane
Leeds
LS2 9JT