Amendment to MR479a - Survival in Amyloidosis
Royal Free London NHS Foundation Trust · NHS Trust
Expired The latest version ended on 6 February 2026. The September 2026 register still lists the agreement, but its term has passed.
- Reference
- DARS-NIC-147841-1G36R
- Latest version
- v0.0
- Term of latest version
- 7 February 2011 to 6 February 2026
- Start date
- 7 February 2011
- Data controller
- Sole Data Controller
- Commercial purposes
- No
- Sublicensing
- No
- Files released to date
- 9
Data controllers
Why the data was released
Objective for processing
The aims of this study would be to establish cause of death and prognosis in these conditions and the effects of therapy on survival.
We would like to avoid causing distress to relatives by pursuing patients for follow-up after they have died. The study would allow us to be continually updated regarding deaths of our patients.
Data access is restricted to those named in section 7 of this agreement. Any changes will be notified to the NHS IC.
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
Not stated in the register.
Datasets on the latest version
Legal basis for provision: Health and Social Care Act 2012 - s261 - 'Other dissemination of information'
| 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 8 of the 9 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 - Scottish NHS / Registration | 4 | April 2016 | May 2018 | Mixed |
| MRIS - Cause of Death Report | 3 | May 2016 | October 2016 | Yes |
| MRIS - Cohort Event Notification Report | 2 | June 2016 | October 2016 | Yes |
Version history
The register lists each renewal of this agreement as a separate row. This site has 1 version.
DARS-NIC-147841-1G36R-v0.0 7 February 2011 to 6 February 2026
- Title
- Amendment to MR479a - Survival in Amyloidosis
- Commercial
- No
- Sublicensing
- No
- Datasets
- 6
- Files released
- 9
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-147841-1G36R-v0.0
Cite this page
NHS England (2026) Data Uses Register, September 2026 edition, agreement DARS-NIC-147841-1G36R, “Amendment to MR479a - Survival in Amyloidosis”. Read via NHS Data Access Explorer (unofficial), https://healthdatauses.uk/agreements/dars-nic-147841-1g36r/ (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-147841-1G36R to see the original rows.