MR1165 - Enhanced surveillance of individuals identified as at increased risk of vCJD/CJD in the UK...
Public Health England (PHE) · Agency/Public Body
Expired The latest version ended on 31 January 2026. The September 2026 register still lists the agreement, but its term has passed.
- Reference
- DARS-NIC-148119-WLQ4M
- Latest version
- v0.0
- Term of latest version
- 1 February 2011 to 31 January 2026
- Start date
- 1 February 2011
- Data controller
- Sole Data Controller
- Commercial purposes
- No
- Sublicensing
- No
- Files released to date
- 45
Why the data was released
Objective for processing
Enhanced surveillance of individuals identified as at increased risk of vCJD/CJD in the UK due to iatrogenic exposures or other indicators of increased risk.
This is a long term follow up study of people who have been placed at additional risk of contracting CJD. The aim of this work is to ascertain any CJD-related deaths amongst individuals identified by actions recommended by the CJD Incidents Panel as at increased risk of CJD. This information is critical to:
a) improve assessment of the risks experienced by these individuals, and others in similar circumstances,
b) inform and evaluate public health measures relating to these individuals;
c) investigate factors associated with transmission, disease and survival in these individuals.
Processing activities
Not stated in the register.
Expected output
Not stated in the register.
Expected measurable benefits
Not stated in the register.
Benefits reported so far
Yielded Benefits is not a requirement for new applications.
Datasets on the latest version
Legal basis for provision: Section 42(4) of the Statistics and Registration Service Act (2007) as amended by section 287 of the Health and Social Care Act (2012); Health and Social Care Act 2012 – s261(7); Other-NHS Regulations (3); Other-NHS Regulatons (3); Section 42(4) of the Statistics and Registration Service Act (2007) as amended by section 287 of the Health and Social Care Act (2012)
| Dataset | Type of data | Sensitivity | Frequency | Confidential data |
|---|---|---|---|---|
| MRIS - Cause of Death Report | Identifiable | Sensitive | Ongoing | — |
| MRIS - Cohort Event Notification Report | Identifiable | Non-Sensitive | Ongoing | — |
| MRIS - Flagging Current Status Report | Identifiable | Non-Sensitive | Ongoing | — |
| MRIS - Members and Postings Report | Identifiable | Non-Sensitive | Ongoing | — |
| MRIS - Personal Demographics Service | Identifiable | Sensitive | Ongoing | — |
| MRIS - Scottish NHS / Registration | Identifiable | Non-Sensitive | Ongoing | — |
Files released
Files released counts only files released externally by DARS. Access granted in NHS England's own systems, such as its Secure Data Environment, is not included.
Patient opt-outs were applied to 26 of the 45 files released under this agreement, across every version. About opt-outs
Files released against version 0.0 of this agreement, summarised by dataset.
| Dataset | Files | First released | Last released | Opt-outs applied |
|---|---|---|---|---|
| MRIS - Cohort Event Notification Report | 21 | May 2016 | March 2020 | Mixed |
| MRIS - Cause of Death Report | 19 | May 2016 | October 2019 | Mixed |
| MRIS - Scottish NHS / Registration | 3 | December 2016 | January 2019 | Mixed |
| MRIS - Flagging Current Status Report | 2 | November 2016 | January 2018 | Yes |
Version history
The register lists each renewal of this agreement as a separate row. This site has 1 version.
DARS-NIC-148119-WLQ4M-v0.0 1 February 2011 to 31 January 2026
- Title
- MR1165 - Enhanced surveillance of individuals identified as at increased risk of vCJD/CJD in the UK...
- Commercial
- No
- Sublicensing
- No
- Datasets
- 6
- Files released
- 45
Datasets: MRIS - Cause of Death Report; MRIS - Cohort Event Notification Report; MRIS - Flagging Current Status Report; MRIS - Members and Postings Report; MRIS - Personal Demographics Service; MRIS - Scottish NHS / Registration
Register history
When this agreement appeared in, or was edited in, each monthly edition of the register. Built by comparing every edition this site holds, the earliest of which is July 2021.
-
July 2021 —
already listed in the earliest edition this site holds, so it may be older. 1 version: DARS-NIC-148119-WLQ4M-v0.0
Cite this page
NHS England (2026) Data Uses Register, September 2026 edition, agreement DARS-NIC-148119-WLQ4M, “MR1165 - Enhanced surveillance of individuals identified as at increased risk of vCJD/CJD in the UK...”. Read via NHS Data Access Explorer (unofficial), https://healthdatauses.uk/agreements/dars-nic-148119-wlq4m/ (accessed [date]).
This address stays the same, but the page is rebuilt with each monthly edition, so the citation names the edition it shows. Every edition's data is kept in the facts store.
Source: datausesregister_september2026.xlsx, September 2026 edition of the NHS England Data Uses Register. Search that workbook for DARS-NIC-148119-WLQ4M to see the original rows.