International Meeting on MS registry
A registry of people living with the chronic disease multiple sclerosis in New Zealand may be set up following a meeting of international experts organised by Victoria University's Health Services Research Centre.
Epidemiologist Lou Gallagher, from the Health Services Research Centre, is organising the meeting to be held at Wellington's Duxton Hotel on January 17, 2003. World experts, including Professor Christian Confavreux, from France, and Dr Rex Simmons, from Australia, will meet with New Zealand neurologists, scientists, and the MS Society of New Zealand.
While there are comprehensive national registries are Denmark and Norway, New Zealand would be the first country in the Southern Hemisphere to have a national database, if it was established.
Dr Gallagher said there would be many benefits from a national MS registry.
"A national MS registry would be able to identify patients efficiently and equitably for access to new treatments as they become available, especially when treatments are targeted at narrow diagnostic categories. Important features of existing registries are voluntary participation and a guarantee of patient privacy."
Multiple Sclerosis (MS) is a chronic condition affecting the nervous system. People are most commonly diagnosed between the ages of 30 and 50, with a wide range of symptoms from tingling and numb extremities to paralysis of the legs. Currently there is no known cure and no definitive cause of MS. A national prevalence survey has never been conducted in New Zealand, but the number of people in New Zealand with MS is likely to be 3-4,000.
Many new research ideas regarding the causes and prevention of multiple sclerosis were being generated but the cost of health research meant they were not studied in New Zealand, she said.
"A registry with anonymous data would allow scientists from varied disciplines to perform detailed investigations of multiple sclerosis risk factors and protective effects."
"New Zealand is uniquely placed to research genetic components of MS susceptibility, since people with Mâori and Pacific Island ancestry have traditionally been 'immune' to MS but this apparent immunity appears to be fading as Maori and Pacific Island people are being diagnosed with the disease."
For more information contact: Lou Gallagher, PhD
Health Services Research Centre, Victoria University, 04-463-6576 or 025-393-646
Issued by Victoria University of Wellington
For further information please contact Antony.Paltridge@vuw.ac.nz or phone +64-4-463-5873 or 029 463 5873