2 Aug 2016

Health professionals welcome spinal injury register

8:20 am on 2 August 2016

A new, lifetime register of New Zealanders with spinal injuries will help improve care for patients, health professionals say.

The national registry launched yesterday will collect and record people's information throughout their lifetime after being first admitted to the Auckland or Christchurch specialist spinal services.

Between 80 and 130 people are diagnosed with spinal cord injuries each year.

Jim Hogg has been using a wheelchair since injuring his spine over thirty years ago when he was 29.

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Health professionals have largely welcomed a new register of spinal injuries. Photo: 123RF

A farmer at the time of he accident he has since retrained as an accountant.

For Mr Hogg said the register has been a long time coming.

"I worked with Dr Alan Clarke probably 20 years ago and at that stage we thought there was 4000 spinal cord injury patients alive in New Zealand at any one time, and we tried to get a registry at the time but privacy issues, who's going to do the work, who's going to fund it - those things have always been a problem."

He said with the understanding of spinal problems "very much developmental" a registry was about incremental progression and learning. However he said while it was it was a good initiative, there were shortcomings.

"The information's going to be fed through the admission to a hospital, so it's going to have a medical bias which is fine for the medical information, but what about all the community information that's out there for people who are not having to use the services of the health department at the time?"

The new registry would be partnered with a similar one at the Rick Hansen Institute in Canada.

New Zealand is the second country to get on board with the institute's register with pilot projects also underway in China and Israel.

Chief executive Bill Barrable said New Zealand and Canada had a long history of collaborating on difficult problems.

"By putting our heads together, not just in New Zealand but in other parts of the world, we're going to get there. We have a great opportunity with this collaboration and the registry is a platform for that.

"It's critical that we're working with other countries because you need a critical mass of patients and people involved in order to be able construct controlled study groups that are comparable enough to do a valid clinical trial."

There are over 30 major trauma and rehabilitation centres across Canada with over 5500 people enrolled on the registry.

Auckland spine surgeon Alpesh Patel said the registry was an excellent move.

"The fact that we can record accurate data prospectively, data that we'll be able to look back at and base research studies on and also use that data to benchmark ourselves internationally, means that we can really make some advances and improve our care for our spinal cord injured patients.

"As a whole we're doing well but we want to keep doing better."

Dr Richard Smaill has been living with a spinal cord injury for over 40 years since a rugby accident when he was 15.

He completed a doctorate into the problems patients with spinal injuries face as they age.

"When I was undertaking my research into ageing of spinal cord injured people in New Zealand, it became very apparent that the existing information being collected on spinal cord injured people was localised, was fragmented and it was inconsistent."

He suggested to ACC Minister Nikki Kaye that the register could be expanded. And Ms Kaye said it could be on the cards.

"I am definitely going to be looking at that. I'm going to be asking a range of questions, I think there are some challenges around consent but I think the more data that we can get the better because that means that we've got a much better understanding both in terms of research but also in terms of who's in our community now and who needs further support."

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

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