University of York: To examine the survival of YHHN patients in relation to their presenting diagnostics, prognostics and treatment.

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

Organisation: University of York
Source reference: DARS-NIC-148035-41S3L-v0.1
Jurisdiction: England
Licence: Open Government Licence v3.0, subject to NHS England terms and exclusions

To examine the survival of YHHN patients in relation to their presenting diagnostics, prognostics and treatment. The YHHN is a unique population based inclusive register, and the findings will have implications for the country as a whole. Data access will be restricted to the research team mentioned in section 7 of this agreement. Any amendments will be notified to the NHS IC.

Register reference: DARS-NIC-148035-41S3L-v0.1
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: 10

Data approved

MRIS - Cause of Death Report
MRIS - Cohort Event Notification Report
MRIS - Scottish NHS / Registration

Objective, as published

Expected benefits, as published

With over 50 different sub-types and many pre-cursor conditions, haematological malignancies comprise a heterogeneous group of cancers with widely differing treatments and prognoses ranging from relatively indolent through to more aggressive forms. YHHN, an inclusive register of patients newly diagnosed with a haematological malignancy whilst resident in the former Strategic Health Authorities of West Yorkshire and North & East Yorkshire and Northern Lincolnshire, was established on 1st September, 2004. With a population of just under 4 million, around 2000 people are newly diagnosed with a haematological malignancy in the region each year. These patients are diagnosed by a central diagnostic laboratory, the Haematological Malignancy Diagnostic Service (HMDS) (www.hmds.org.uk ) based at S…

Source: https://webarchive.nationalarchives.gov.uk/ukgwa/2019/http://content.digital.nhs.uk/media/22305/Data-Release-Register-April-to-August-2016/xls/Data_Release_Register__April_-_August_2016.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.