Spinal cord impairment registry goes live

  • Jonathan Coleman
  • Nikki Kaye
Health ACC

A national registry which goes live today will lead to better services and better care and support for people living with a spinal cord impairment, say Health Minister Jonathan Coleman and ACC Minister Nikki Kaye.

“This registry will collect and record a wide range of information about people throughout their lifetime, from the moment they’re affected by a spinal cord impairment,” says Dr Coleman.

“Information captured will include demographic information, details of the cause of impairment, and details of all subsequent support received, including medical, physical, psychological and social support.

“The more information we capture, the better we can identify how people are progressing, and if they’re receiving the right treatment and support. We can also shape services to better meet people’s needs.”

The registry will be run out of Counties Manukau and Canterbury DHBs, where New Zealand’s two adult specialist spinal centres are based.

The New Zealand registry will be a satellite of the Rick Hansen Spinal Cord Injury Registry, developed in Canada.

“There’s a relatively small pool of people worldwide who are affected by spinal cord impairment, compared with other health conditions,” says Dr Coleman.

“By collaborating internationally, we can contribute to and draw on the expertise and insights being developed around the world to improve treatment and support.”

Ms Kaye, who will launch the registry this morning at Middlemore Hospital in Auckland, says this is a big step forward in ensuring that people receive the best possible care and rehabilitation.

“For the first time in New Zealand, we’ll have a more holistic approach to supporting some of our most vulnerable.

“It’s important we develop the best picture we can of the needs of people with spinal cord impairment, and we ensure services are coordinated to meet their needs.

“This new initiative is also about taking a whole-of-life approach. It will allow ongoing contact so we can keep track of how people are doing, especially as they go through different stages in life and their needs change.”

Ms Kaye says the registry is one of eight objectives being implemented as part of the New Zealand Spinal Cord Impairment Action Plan 2014 - 2019.

“Last July, along with Minister Coleman, I was pleased to launch a new policy that ensures people who’ve received a spinal cord injury receive specialist hospital attention as quickly as possible after their accident.

“Unless they need initial life-saving treatment at a nearby hospital, people with spinal cord injuries are now taken straight to one of our two specialist spinal centres, to maximise their long-term health and rehabilitation outcomes.

“The aim is for them to receive specialist hospital attention within four hours, which is international best practice.

“The registry is another step towards achieving the vision of the Action Plan to provide the best possible health and wellbeing outcomes for people with spinal cord impairment, to enhance both their quality of life and ability to participate in society.

“We know from the Canadian experience that the registry will have multiple benefits. These include improved understanding of risk factors, which will lead to better care and treatment, as well as improved understanding of injury trends which will lead to smarter injury prevention initiatives.”

Data captured by the registry will be collected by dedicated health professionals and entered into a secure web-based platform by trained registry coordinators.

Information will be collected from all consenting new spinal cord impairment patients admitted to the Auckland and Christchurch specialist spinal services.

The costs of establishing and maintaining the registry are being met by ACC and Counties Manukau and Canterbury DHBs.

A copy of the Action Plan can be found on the Ministry of Health website:

http://www.health.govt.nz/publication/new-zealand-spinal-cord-impairment-action-plan-2014-2019