PROSTATE PROGRESS - PATIENT DATA PLATFORM
Research type
Research Database
IRAS ID
339842
Contact name
David James
Contact email
Research summary
Prostate Progress
REC name
North East - Newcastle & North Tyneside 1 Research Ethics Committee
REC reference
24/NE/0084
Date of REC Opinion
24 Jun 2024
REC opinion
Further Information Favourable Opinion
Data collection arrangements
Prostate Progress will be a centralised and standardised repository of prostate cancer data and insights, of utility to healthcare providers, researchers, and patients. The platform will facilitate the integration and analysis of patient-reported and longitudinal clinical data, supporting patient-centric research.
Prostate Progress will link patient reported outcomes (PROMs) data provided by patients with their clinical data which is stored by the NHS. This linked data will then go through a process of being de-identified before being pooled (along with thousands of other patients' data) into a research database. This database will be where approved researchers with approved projects will be able to conduct research with the aim of making advances in our knowledge of prostate cancer.
Data collection and storage will be conducted using the strictest standards and will follow the 'Five Safes' framework to ensure patient data is kept safe.
Prostate Progress has been named the first Driver Project for NHS England's Data for R&D Programme.
Research programme
Anyone living in the UK with a diagnosis (past or present) of prostate cancer, who is over the age of 18 years old, is eligible to take part in this research database. Participation is simple, safe and may help save lives. To take part users will consent to a consent form, complete a questionnaire about their prostate cancer experience and then complete periodic health questionnaires about their quality of life. In providing this information, along with their consent to link this to their clinical data, participants will be able to help us create a much richer understanding of the impact of prostate cancer and help develop new ways to test, treat and hopefully one day cure prostate cancer.
Research database title
Prostate Progress
Establishment organisation
Prostate Cancer Research
Establishment organisation address
23-24 Great James Street
Suite 2
London
WC1N 3ES