Saturday, August 22, 2009

An Easy Way for People with MS to Get Involved (healthy readers may just want to skip over this one)

If you have MS there are lots of ways to help out. You can participate in a clinical trial. You can join a support group. You can start an MS Blog :-) . But perhaps the easiest way for you to engage in the effort to find a cure is to join the registry for the North American Research Committee on Multiple Sclerosis (NARCOMS). If you are not yet a member of the registry I hope you’ll give it a good look. I’ve been a participant for, heck, I can’t remember how many years. Your only obligation is to fill out an online survey about your experiences with MS once per quarter. I’m convinced that the information is kept completely confidential. It takes about 10 minutes to fill out.
From the NARCOMS website:
“The purpose of the Registry is to speed the development of new therapies and healthcare services by facilitating research in these areas and reducing the time and cost of research studies. Individuals with Multiple Sclerosis are invited to enroll in the Registry through direct mailings, MS centers, support groups, and the NARCOMS Registry webpage. Enrollment involves filling out a questionnaire and mailing it or submitting it online to the Registry Administration Office. Participants are assured that strict confidentiality will be maintained and that their names will not be given to anyone without their permission. The questions asked are regarding demographic information, MS-related medical history, immunologic and symptomatic therapies, health care services used, and a series of patient-assessed performance scales that reflect disability in eight domains of function.
Benefits of Participation
· You are helping to provide the information needed to learn about the variations of MS in a very large group of patients and to monitor the progression of the disease
· You help us monitor the effects of various treatments. Your information may be providing ideas for future research
· You will be receiving the printed version of the MSQR free of charge (note from Mitch: this is an outstanding publication)
· You will be informed of recent studies and their results
· You will be notified of clinical trials in which you may be eligible to participate”
Click here to sign up.

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