NHS Digital Data Release Register - reformatted

Buckinghamshire Healthcare NHS Trust projects

13 data files in total were disseminated unsafely (information about files used safely is missing for TRE/"system access" projects).

MR351 - Health/Functional Status of Ageing SCI Persons — DARS-NIC-148202-4LQ9V

Type of data: information not disclosed for TRE projects

Opt outs honoured: Identifiable

Legal basis: , National Health Service Act 2006 - s251 - 'Control of patient information'.; Other-Secretary of State, National Health Service Act 2006 - s251 - 'Control of patient information'. ; Other-Secretary of State

Purposes: No (NHS Trust)

Sensitive: Sensitive, and Non-Sensitive

When:DSA runs 2011-05-31 — 2026-05-30

Access method: One-Off


Sublicensing allowed: No


  1. MRIS - Cause of Death Report
  2. MRIS - Cohort Event Notification Report
  3. MRIS - Flagging Current Status Report
  4. MRIS - Members and Postings Report
  5. MRIS - Personal Demographics Service
  6. MRIS - Scottish NHS / Registration


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).

Expected 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.


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.


Retrospective data review and prospective data collection.

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.