Kings College Medical School: To determine overall outcome in terms of mortality and early entry into care of all babies and children (up to 5 years of age) identified with sickle cell disease (HbSS, HbSC, HbS,

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

Organisation: Kings College Medical School
Source reference: DARS-NIC-148120-0Q51J-v0.0
Jurisdiction: England
Licence: Open Government Licence v3.0, subject to NHS England terms and exclusions

To determine overall outcome in terms of mortality and early entry into care of all babies and children (up to 5 years of age) identified with sickle cell disease (HbSS, HbSC, HbS, beta thalassaemia, Hb S/D Punjab, HbS/OArab) and overall access to timely informed choice in preceding screening history for parents.

Register reference: DARS-NIC-148120-0Q51J-v0.0
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: 6

Data approved

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

Objective, as published

Expected benefits, as published

To be completed by applicant

Source: https://webarchive.nationalarchives.gov.uk/ukgwa/2019/http://content.digital.nhs.uk/media/23861/Release-Register-December-16---February-17/xls/Release_Register__December_16_-_February_17.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.