MR351 - Health/Functional Status of Ageing SCI Persons
Buckinghamshire Healthcare NHS Trust · NHS Trust
Expired The latest version ended on 30 May 2026. The September 2026 register still lists the agreement, but its term has passed.
- Reference
- DARS-NIC-148202-4LQ9V
- Latest version
- v0.0
- Term of latest version
- 31 May 2011 to 30 May 2026
- Start date
- 31 May 2011
- Data controller
- Sole Data Controller
- Commercial purposes
- No
- Sublicensing
- No
- Files released to date
- 0
Why the data was released
Objective for processing
Life expectancy of persons with traumatic SCI, though shorter compared with the general population, has been improving dramatically over the last five decades (1,2,3,4). Medical advances in the second half of the twentieth century, improved emergency medical services and opening of specialised spinal injury centres have significantly improved both the immediate and long-term survival following SCI. As people with SCI live longer, the leading causes of death start showing a shift from the typical spinal cord related mortality to that of the ageing general population (2,3,5). However, the latest reports from the USA suggest that this improvement in survival is now slowing down (6,7). The only study in the UK, by Frankel et al 1998, included persons injured between 1943 and 1990 and analysed their long-term survival up to 1995 (3). An extension of that study is now urgently required to determine the latest trends in mortality since 1995, looking both at trends in life-expectancy and at changes in leading causes of death.
In the earlier studies, different points in time after SCI were used to distinguish between early (acute) and long-term survival: 1 year (2,3,6), 18 months (4), 2 years (7). In our previous study of long-term survival we used the 1 year cut-off point (3). In the proposed study, we intend to analyse early deaths in the newly added cases (injured since 1991) and try to determine when after injury early mortality subsides and long-term survival starts.
In the newly added cases we plan to collect a few additional variables, such as ventilator dependency, associated injuries and chronic health conditions, education and employment, in order to determine their contribution to survival and to make the UK data more comparable to the latest USA publications (6,7).
Processing activities
Retrospective data review and prospective data collection.
Sample:
Adding new cases (approximately 2000) injured since 1 January 1991 to the existing sample of 3179 will provide a total study sample of around 5000 over a 67 year period (1943-2010).
Inclusion criteria:
Traumatic spinal cord injury, initial treatment within one year of injury at either National Spinal Injuries Centre, Stoke Mandeville Hospital, Aylesbury or Regional Spinal Injuries Centre, District General Hospital, Southport and residence in the UK.
Expected output
An up-to-date knowledge of life expectancy and leading causes of death has huge potential impact on quality of care in terms of developing preventative and therapeutic interventions and planning necessary provisions for life-long care of people with SCI.
Expected measurable benefits
Primary objective is to determine the life expectancy and causes of death in people with spinal cord injury in the UK.
Secondary objectives are to establish the change in trends over time and to compare the UK and the USA survival results.
Benefits reported so far
Yielded Benefits is not a requirement for new applications.
Datasets on the latest version
Legal basis for provision: National Health Service Act 2006 - s251 - 'Control of patient information'. ; Other-Secretary of State
| Dataset | Type of data | Sensitivity | Frequency | Confidential data |
|---|---|---|---|---|
| MRIS - Cause of Death Report | Identifiable | Sensitive | One-Off | — |
| MRIS - Cohort Event Notification Report | Identifiable | Non-Sensitive | One-Off | — |
| MRIS - Flagging Current Status Report | Identifiable | Non-Sensitive | One-Off | — |
| MRIS - Members and Postings Report | Identifiable | Non-Sensitive | One-Off | — |
| MRIS - Personal Demographics Service | Identifiable | Sensitive | One-Off | — |
| MRIS - Scottish NHS / Registration | Identifiable | Non-Sensitive | One-Off | — |
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.
No files recorded as released under this agreement.
Version history
The register lists each renewal of this agreement as a separate row. This site has 1 version.
DARS-NIC-148202-4LQ9V-v0.0 31 May 2011 to 30 May 2026
- Title
- MR351 - Health/Functional Status of Ageing SCI Persons
- Commercial
- No
- Sublicensing
- No
- Datasets
- 6
- Files released
- 0
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-148202-4LQ9V-v0.0
-
June 2023
Amended DARS-NIC-148202-4LQ9V-v0.0
- MRIS - Personal Demographics Service: legal basis:
“
information'.;” became “information'. ;”
- MRIS - Personal Demographics Service: legal basis:
“
"Amended in place" means NHS England changed the record without issuing a new version number. The register publishes no changelog for those edits; this site infers them by comparing editions. An edit is attributed to the edition it first appears in, not to the date it was made.
Cite this page
NHS England (2026) Data Uses Register, September 2026 edition, agreement DARS-NIC-148202-4LQ9V, “MR351 - Health/Functional Status of Ageing SCI Persons”. Read via NHS Data Access Explorer (unofficial), https://healthdatauses.uk/agreements/dars-nic-148202-4lq9v/ (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-148202-4LQ9V to see the original rows.