Data within the Yorkshire Register is held within the School of Medicine at the University of Leeds.
The Register currently contains information on 12,500 young people diagnosed with cancer and benign tumours in the Yorkshire area.
A demographic breakdown from 2022 can be found in the following table:
The Yorkshire Register is one of the only databases that covers the paediatric age range and the only register in England that collects data on all patients diagnosed under the age of 40 years. Uniquely, the Yorkshire Register also includes 120,000 linked records such as information on relapses and mental health data. The Register includes more detailed treatment and follow-up information than what is recorded in the national cancer registry (NCRAS)
Recently, we have established a secure, electronic data transfer system from patient records systems within hospitals. Where essential data is missing, data is manually abstracted from hospitals notes.
Data from the Register has recently shown:
- The number of children and young people diagnosed with cancer in Yorkshire is increasing.
- Childhood cancer survival rates in Yorkshire are some of the highest in the world, at 86% five years from diagnosis.
Given the sensitive nature of the data we collect, we adhere to strict data protection protocols. For more information on how we handle your personal data, and the right of individuals and family members to opt-out of data collection, please visit our Patients and Survivors section.