Picker Institute Europe: The University of Leeds requires a cohort of men with prostrate cancer to be list-cleaned to provide up to date contact details as well as PDS data, which includes fact of death, t

Data-sharing agreement from NHS Digital registers of approved data releases, 2014–2019. Evidence status: source reported.

Organisation: Picker Institute Europe
Source reference: DARS-NIC-367152-K6Y1D-v3.5
Jurisdiction: England
Licence: Open Government Licence v3.0, subject to NHS England terms and exclusions

Register reference: DARS-NIC-367152-K6Y1D-v3.5
Agreement period: not published to no end date published
For commercial purposes (as marked in the register): Not stated
Release files listed by NHS England: 15

Data approved

MRIS - List Cleaning Report
MRIS - Personal Demographics Service

Objective, as published

The University of Leeds requires a cohort of men with prostrate cancer to be list-cleaned to provide up to date contact details as well as PDS data, which includes fact of death, to be supplied to the Picker Institute Europe for the purpose of administrating a PROM survey for use in the Life After Prostate Cancer Study. A UK wide consortium of researchers, clinical experts and patients under the Movember Foundation Health Outcomes Improvement Initiative has developed the study. The study is funded by Prostrate Cancer UK and Movember Foundation. The University of Leeds undertakes the role of the sponsor for this study. Public Health England (PHE) and Welsh Cancer Intelligence and Surveillance Unit (WCISU) will supply cancer demographic data to Picker Institute Europe. Picker Institute Europe is an international charity working across social and health care. No data for this project will flow outside of England and Wales. Picker Institute Europe will supply patient identifiable data to NHS Digital. NHS Digital will disseminate identifiable data to Picker Institute Europe. This is the first ever in-depth UK wide study of men diagnosed with prostate cancer. Prostate cancer (PCa) is the most common cancer (excluding melanoma) diagnosed in men in the United Kingdom (UK) and the number of men living with disease is increasing. Prostate cancer treatment can impact physically, psychologically and socially, affecting the health-related quality of life (HRQoL) of men and their partners…

Expected benefits, as published

Clinical and scientific progress in managing prostate cancer will only bring benefits in terms of well-being and survival for patients if we develop comprehensive and clinically meaningful approaches to measuring the important patient outcomes. Primary aims • To describe the Health-Related Quality of Life (HRQL, e.g., physical, psychosocial) of men with prostate cancer using qualitative and quantitative methods; • To explore if and how their HRQL is associated (cross-sectional) or is predicted by (longitudinal) disease, treatment and/or patient characteristics with a view to inform development of health care policy and service delivery in ways that better meet the needs of such men and their families; • To describe the levels of patient empowerment and undertake preliminary exploration of…

Source: https://webarchive.nationalarchives.gov.uk/ukgwa/2019/https://digital.nhs.uk/binaries/content/assets/legacy/excel/2/1/releaseregister20171201_20180228.xlsx. Captured 2026-10-30.

Limitations: Agreement as recorded in an NHS Digital register of approved data releases (2014–2019), retrieved from the UK Government Web Archive. That register lists releases made in its period and the agreement's purpose statement as it then stood; it gives no agreement dates, and the agreement may have changed since. Imported only where a paper quotes a reference no current register holds.