BSU SCI Registry Development Project

Overview

This was a pilot project to evaluate the utility and feasibility of two registries (RHSCIR (Vancouver) and Victorian Spinal Injury Data Base) for providing demographic data on people who sustain a SCI in New Zealand.

The aim was to establish a Spinal Cord Impairment (SCI) national registry with the feasibility/pilot study to be Burwood-based.  This is  part of the New Zealand Spinal Cord Impairment Action Plan 2014–2019 which outlines a vision, purpose, priorities and objectives to help ensure the best possible health and wellbeing outcomes for people with spinal cord impairment (SCI) and provide standardised services across New Zealand (Accident Compensation Corporation and the Ministry of Health). See the Action Plan HERE.

One objective of the strategy was to establish a New Zealand registry for SCI to provide nationally relevant and internationally comparable data to inform health care delivery improvements and research objectives.

Method

A Burwood based working group including BAIL, clinical and management staff, researchers and consumer representatives carried out a year long pilot process to determine the best option for a SCI registry in New Zealand. Stakeholders were surveyed to establish what data should be collected and existing international SCI databases were reviewed to determine their suitability for use in the New Zealand context. Two registries were shortlisted, customised to New Zealand conditions and trialled. The Canadian-based Rick Hansen Spinal Cord Injury Registry (RHSCIR) was determined to be the best registry to use.  The RHSCIR collects data from 31 Canadian acute care and rehabilitation hospitals, with over 5100 patients with SCI enrolled since its inception in 2004. New Zealand will be the first international site to collect information on the RHSCIR, with other international sites in China and Israel ready to enrol.

Status of Research

Completed.

Outputs

The New Zealand Spinal Cord Injury Registry was officially launched on the 1st August 2016 and data is collected on all new patients admitted to either the Burwood Spinal Unit or the Auckland Spinal Rehabilitation Unit. We expect over 100 patients each year to be added to the NZRHSCIR. The registry is managed by registry coordinators based at each spinal unit, with oversight from a national governance group.

For the first time there is an inventory of all SCIs treated in specialist spinal centres in New Zealand (traumatic and non-traumatic) to determine natural history, prevalence and incidence. This will play a role in understanding national trends and where to place preventative measures to address these. Clinicians are able to use the registry to monitor clinical outcomes and service delivery, and researchers are able to apply to access data from the registry for research purposes.

The official launch of the registry on the 1st August 2016 was the the culmination of many years work. Over 70 people attended the function at Middlemore Hospital and guests included the Honourable Nikki Kaye (Minister for ACC) and Bill Barrable (CEO of the Rick Hansen Institute). Orthopaedic surgeon Rowan Schouten spoke on the clinical relevance of the registry, while BAIL board member Dr Richard Smaill talked about the registry from his research experience and from the perspective from someone with a lived experience of SCI. (Pictured: Peter Robinson (Chief Clinical Advisor, ACC), Peter Robinson (Chief Clinical Advisor, ACC), Hon. Nikki Kaye (Minister for ACC), Bill Barrable (CEO of the Rick Hansen Institute) Professor Ian Civil (Chair of the New Zealand Spinal Cord Strategy Governance group)).

Read a media report of the launch HERE  and HERE

Read a report on the first year of the Registry HERE