The number of survivors of childhood cancers is increasing mainly due to further advances in treatment. The long-term surveillance of the psychological and physical impact of a cancer diagnosis is therefore becoming more of a priority in research. Some treatments for cancer can produce adverse and long term side effects which reinforces the need for cancer research studies.
Therefore, rather than just concentrating on the study of how many and at what rate patients in the Northern Region Young Persons’ Malignant Disease Registry population have cancer (incidence and prevalence), the registry aims and outcomes reflect the increasing importance of long term follow-up of patients who are diagnosed with a cancer in childhood or in early adulthood.
Our Aims
Collect, organise, store and analyse a pre-defined research database of accurate and timely information on the following cohorts:
- Patients aged less than 25 years diagnosed with a primary cancer whilst living in North East England and North Cumbria.
- Patients aged less than 25 years diagnosed with a primary cancer which is treated in a hospital within North East England and North Cumbria.
- Use the database for research, planning, and education so that the burden from cancer may be reduced and the patients’ experience and their outcomes improve.
Outcomes
- Improved healthcare provision particularly for children and young adults diagnosed with cancer and living in the northern region. The registry will facilitate health services research and high quality audit, which will in turn improve the delivery of care to children and young people.
- More cost-effective healthcare provision because services can be targeted to areas associated with particular risk.
- Improved understanding of why young people in North East England and North Cumbria develop cancer.
- Calculate incidence and prevalence rates for the cohorts which will serve as an indicator of the burden of cancer for the registry population.
- Use the information collected from the cohorts to facilitate timely diagnosis and the most appropriate management of late adverse health effects that are commonly experienced within the increasing population of cancer survivors through long-term follow up.