The Northern Region Young Persons' Malignant Disease Registry
Research type
Research Database
IRAS ID
160395
Contact name
Richard J. Q. McNally
Contact email
Research summary
The Northern Region Young Persons' Malignant Disease Registry (NRYPMDR)
REC name
North East - Newcastle & North Tyneside 1 Research Ethics Committee
REC reference
18/NE/0298
Date of REC Opinion
17 Mar 2020
REC opinion
Further Information Favourable Opinion
Data collection arrangements
Information essential for the purposes of carrying out a programme of research into the patterns and causes of cancer in children and young people will be held on a secure database and only accessible by experienced researchers at Newcastle University.
The University works closely with the NHS to ensure that all patient data are held according to current UK law and ethical approval has been obtained to process this information. We will record information on diagnosis (including place of referral), treatment and follow-up including any complications and late effects of cancer. No identifiable data are ever released to individuals except under strict conditions or to approved researchers.
Research programme
Research supported by the NRYPMDR database focuses on the exploration of patterns and causes of cancer occurring in children and young people less than 25 years of age. The registry has been in existence since 1968 and is one of the oldest of its kind in the world. It is a unique source of information and research findings over the last 50 years have contributed to the knowledge and understanding of cancer within the Northern region (North East England and North Cumbria). It has helped identify best treatments and care pathways to maximise survival and quality of life for young people.
Research database title
The Northern Region Young Persons' Malignant Disease Registry (NRYPMDR)
Establishment organisation
Population Health Sciences Institute, Newcastle University
Establishment organisation address
SJSI, Level 4, RVI,
Queen Victoria Road,
Newcastle Upon Tyne
NE1 4LP