University of Bristol: The Cleft Collective project's aim is to create the infrastructure, capacity and resources necessary to gain important new knowledge that will advance our understanding of the caus

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

Organisation

University of Bristol

Source reference

DARS-NIC-207953-Q9H2M-v0.1

Jurisdiction

England

Licence

Open Government Licence v3.0, subject to NHS England terms and exclusions

The Cleft Collective project's aim is to create the infrastructure, capacity and resources necessary to gain important new knowledge that will advance our understanding of the causes of cleft lip and/or palate, inform treatment and ultimately improve the lives of children, adolescents and adults with the condition through the creation of a Birth cohort study and a Five-Year cohort study. We are conscious of the fact that a member of our cohort may die while we are out of contact with the study family and we wish to minimise the risk of upsetting them by attempting to make contact without knowi

Register reference

DARS-NIC-207953-Q9H2M-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

4

Data approved

• MRIS - Cohort Event Notification Report
• MRIS - Flagging Current Status Report
• MRIS - Personal Demographics Service

Objective, as published

The Cleft Collective project's aim is to create the infrastructure, capacity and resources necessary to gain important new knowledge that will advance our understanding of the causes of cleft lip and/or palate, inform treatment and ultimately improve the lives of children, adolescents and adults with the condition through the creation of a Birth cohort study and a Five-Year cohort study. We are conscious of the fact that a member of our cohort may die while we are out of contact with the study family and we wish to minimise the risk of upsetting them by attempting to make contact without knowing the circumstances. We also believe that learning of an individual's cancer registration will provide vital health information for this research project. Through continued notification of these data, The Cleft Collective will accumulate data that will enable studies to be undertaken on the environmental and genetic factors related to cleft. To clarify, we would like to receive the full range of data provided by the IC Flagging and Tracing service. Statistical analysis will take place at such times as the numbers in any particular group suggest that this would be feasible. Statisticians and researchers do not have access to the personal details of the study participants. Disclosure control mechanisms will be employed to limit the risk of disclosure through small cell counts.

Source: https://webarchive.nationalarchives.gov.uk/ukgwa/2019/http://content.digital.nhs.uk/media/23167/Data-Release-Register-September---November-2016/xls/Data_Release_Register__September_-_November_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.