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MS Incidence Study

 

A national incidence study of Multiple Sclerosis in New Zealand


In New Zealand, only two studies have been undertaken to measure the incidence of multiple sclerosis (MS), both are regional, and were conducted between two and four decades ago - thus the true incidence of MS in the country is unknown. In addition, no previous study has reported incidence or the rate of conversion from a first demyelinating event (FDE) to MS in a national population, which has lead to a significant knowledge gap of the natural history of early MS. 
 
The specific aims of the study are:

1. To determine the number of people presenting with a first demyelinating event or a new diagnosis of MS between June 1st 2012 and May 31st 2014.

2. To determine the rate of conversion from a first demyelinating event to MS over two years.

3. To determine whether the conversion rate is affected by where you live, (North or South Island) ethnic background or ancestry, as well as lifestyle factors such as smoking.

4. To document the symptoms at the time of the first demyelinating event and any further symptoms at 6, 12 and 24 months.

5. To examine whether the symptoms influence your general health status.

6. To examine whether the symptoms adversely affect your work or schooling at onset and two years.

The length of this study is 2 years. Most of the information we require will be able to be provided by your neurologist at routine clinic visits at 6, 12 and 24 months. If you consent to participate in the study and for any reason you are unable to attend a clinic visit or a clinic visit is not scheduled you will receive a 20 minute phone follow-up by the study staff at a time that is convenient to you. Knowledge about environmental and lifestyle factors and of the natural history of demyelinating syndromes is essential in order to develop early intervention strategies. The results of this study would help guide doctors in making treatment decisions and provide patients with a clearer idea of their risks of further demyelinating events.


Your participation is entirely voluntary (your choice) and you may withdraw from the study at any time. Your decision will not affect your present or future care or treatment. We would like to reassure you that we take the privacy of all participants seriously. Personal and family information will not be released, passed on to a third party or made public for any reason. We will be using only identification numbers when analysing the study and each person’s personal details will remain strictly confidential. No material that could personally identify you will be used in any reports on this study.

The full study has gotten underway in June 2012 with the approval from the Multi-region Ethics Committee (ref: MEC/12/02/016). People diagnosed with MS or FDE between the 1st of June 2012 and 31st of May 2014 are being invited to participate via their neurologist or MS nurse or Society Field Officer. If you have NOT been asked to participate, then contact the study group at: 

MS Study Group
66 Stewart Street
Christchurch 8011
Phone: 0800 MS STUDY (0800 677 8839)
E mail: msstudy@nzbri.org

Or you can contact us for more information.