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Spinal cord injury registry to help NZ patients

Rick Hansen Institute Monday 01 August 2016, 09:27AM

Media release from Rick Hansen Institute

Generous support from a well-established Canadian spinal cord injury (SCI) registry is set to help patients and families living in New Zealand with the most devastating of injuries. In a world first, the Rick Hansen Spinal Cord Registry has helped spinal units in both Burwood and Middlemore Hospitals to develop a customized registry that will be used to improve the understanding and treatment of SCI. The Registry is to be launched today at Middlemore Hospital. The registry will both help improve the quality of life and reduce the myriad of possible complications that can arise following an injury of this type. Between 80 to 130 New Zealanders have a spinal cord injury each year.

The Rick Hansen Registry provides information on current best practice and informs clinicians to assess and compare treatments with international benchmarks. Novel therapies can be studied and new ways of treating SCI can be explored. For example, it used to be thought it was best for patients to lie immobilised for a couple of days before spinal surgery. Now we know it is essential for patients to be transferred to a specialist spinal centre as quickly as possible for immediate surgery. This has much improved outcomes as well as reducing the burden on the health system. 

Bill Barrable, CEO of the Rick Hansen Institute congratulates New Zealand for being the first country outside of Canada to adopt the register. “The Rick Hansen Institute congratulates the New Zealand SCI Governance Group for the leadership they’ve demonstrated in adopting the Rick Hansen Spinal Cord Injury Registry (RHSCIR) as the New Zealand spinal cord injury registry. This decision demonstrates their commitment to excellence in performing research that improves the delivery of care and health care outcomes for individuals with spinal cord injury. We look forward to RHSCIR providing the opportunity for further collaboration on future projects," he said.

Unlike randomised trials, registries provide a large heterogeneous group of patients who have received normal clinical care, have not been selected to avoid concurrent treatments or other medical problems and are followed up based on usual visiting schedules.  This creates the ability to review the effectiveness of treatments and management in a real world context. 

Information from registries can be used for audit, planning, research and international comparisons. This plays a role in understanding trends and where to place preventative measures to address these. This is also essential in understanding how individuals move through the process of SCI in NZ and for staff to be able to answer patients' questions knowledgably, with supporting evidence from local sources.

There is growing evidence that registries result in cost savings by improving care.  Properly funded and operated national clinical registries can make measurable differences to the cost, quality and safety of care.  The Rick Hansen Register already contains information on over 4,000 spinal patients. In New Zealand, we have attempted to establish our own SCI for over 40 years, but we have failed to develop a robust, sustainable high-quality product. Following a successful pilot at Burwood Hospital, Christchurch, ACC agreed to commit to ongoing funding to ensure the day-to-day costs associated with running and maintaining the database were covered.

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