Keeping in Touch Fall 2012

by Valerie A. Cwik, M.D. on October 1, 2012 - 9:00am

QUEST Vol. 19, No. 4

Whether it’s funding research, or providing services and health care, MDA is keenly focused on improving the lives of those we serve.

That’s why I’m really excited about our latest program: the MDA Neuromuscular Disease Registry. The registry, which will be launched in a number of MDA clinics by the end of this year, is a powerful tool for improving care, and ultimately, length and quality of life for people with neuromuscular disease.

As you’ll learn in the article, MDA Launches Clinical Neuromuscular Disease Registry, the MDA Registry will gather information on the health status and treatment of individuals seen in our MDA neuromuscular clinics. By collecting such data longitudinally (at different points over time), MDA will be able to more accurately chart the course of each disease and to definitively identify the most effective treatments — ensuring that you or your loved one has access to the very best health care possible.

In addition to improving health care, the registry will help speed up the pace of research by making it easier to recruit appropriate participants for clinical trials.

Valerie A. Cwik, M.D.

How will it work? At a clinic visit, a member of your health care team will explain the registry and gain your permission to collect your health care information (the privacy of all collected data will be carefully safeguarded). Each time you visit your MDA clinic, information about your care and health status will be entered into the Web-based database, adding steadily to our knowledge base. The registry will be rolled out in stages. But ultimately, through MDA’s national network of 200 clinics, we hope to collect data from tens of thousands of individuals each year.

The registry represents a huge step forward in the fight against neuromuscular disease. It’s another example of MDA’s single-minded focus on improving the lives of everyone it serves. When it’s your turn to be asked to participate, I hope your answer will be an enthusiastic “yes!”

Valerie A. Cwik, M.D.
Interim President and Medical Director

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