title: People ageing with spinal cord injury in New Zealand: a hidden population? The need for a spinal cord injury registry.
abstract: OBJECTIVE
  To identify and establish a research database of ageing New Zealand people who sustained a traumatic or non-traumatic spinal cord injury (SCI) before 1990.
  
  
  METHODS
  All living New Zealand residents incurring a SCI before 1 January 1990 were eligible. A co-ordinated consultation with apposite New Zealand organisations was undertaken to identify and access existing SCI databases, and remove duplicate or ineligible records.
  
  
  RESULTS
  1,400 people were identified. Using the national patient information management system to determine eligibility, 1,174 people remained after exclusions; 600 (51.1%) through the Auckland Spinal Rehabilitation Unit and 574 (48.9%) through the Burwood Spinal Unit. Common to both databases were people's National Health Index number, contact details, basic demographic data, date of injury, and neurological level of SCI.
  
  
  CONCLUSIONS
  An unexpectedly large SCI population was uncovered; a population largely hidden due to the uncoordinated, fragmented and inconsistently collected information held within different organisations. As life expectancy rapidly increases for those with SCI, coupled with an accelerated ageing general population, this hidden SCI population can be expected to grow. A single, well-managed and coordinated national SCI registry is urgently needed in New Zealand for planning and delivery of services, especially for those developing age-related complex interwoven secondary conditions.
authors.affiliation: Department of Population Health, University of Otago Christchurch, PO Box 4345, Christchurch 8140, New Zealand. rsmaill@xtra.co.nz.
authors.forename: Richard
authors.initials: R
authors.lastname: Smaill
authors.affiliation: School of Health Sciences, University of Canterbury, Christchurch and School of Nursing, Midwifery, New Zealand and Social Work, University of Queensland, Australia.
authors.forename: Philip J
authors.initials: PJ
authors.lastname: Schluter
authors.affiliation: School of Health Sciences, University of Canterbury, Christchurch, New Zealand.
authors.forename: Pauline
authors.initials: P
authors.lastname: Barnett
authors.affiliation: Department of Medicine, Health Care of the Elderly, University of Otago, Christchurch, New Zealand.
authors.forename: Sally
authors.initials: S
authors.lastname: Keeling
mesh_terms: D000328:Adult; D017677:Age Distribution; D000368:Aged; D000369:Aged, 80 and over; D000375:Aging; D006801:Humans; D008297:Male; D008485:Medical Audit; D008875:Middle Aged; D009520:New Zealand / Q000453:epidemiology; D012042:Registries; D012189:Retrospective Studies; D013119:Spinal Cord Injuries / Q000453:epidemiology* / Q000209:etiology