A registry of people with spinal cord injuries is set to go live next month with the aim of trying to improve their lives and ease the burden on the health system.
Between 80 and 130 people are diagnosed with spinal cord injuries each year.
No registry exists and there has been a long-standing commitment to get one established, similar to one in operation for cancer patients.
A paper released in the New Zealand Medical Journal this morning said a registry was urgently needed for the planning and delivery of services.
Christine Howard-Brown, New Zealand spinal cord impairment registry group interim chair, said the lack of a registry meant it had been very difficult to determine the incidence of spinal cord impairment in New Zealand.
"There's no data for recalling people with spinal cord impairment to help maintain their wellness as they age."
Mrs Howard-Brown said there were many uses for a registry, including improving data quality and the care that people affected received.
She said a spinal cord injury was a big change for the individual and could be a big burden on the health system as well.
"It is a major issue because it's such a life changing experience for people who've got really high and complex needs and and changes not only for them but their family that they live with."
Mrs Howard-Brown said people also needed specialist services and to be recalled for treatment.
"It really is a small number of clinicians that have got this wealth of knowledge that is needed for complex conditions such as this."
Mrs Howard-Brown said as a result of not having a registry, there had been limited research opportunities and an inability to benchmark how New Zealand was doing compared with other countries.
No data had been gathered to understand how people who were impaired aged.
The registry will go live on the 1 August and has the support of the Health Minister Jonathan Coleman and the ACC Minister Nikki Kaye.