By Tuula Tyry, NARCOMS Program Manager
As you know by now, MS is a very perplexing disease. Despite a wealth of research, many aspects of the disease remain poorly understood. The non-profit NARCOMS Registry* expedites MS research by providing a unique resource for investigators.
The NARCOMS Registry is based on the concept of following disease and treatment patterns in a large group of people over time, similar to the Harvard Nurses’ Health Study that has been running since 1976. The information gathered for NARCOMS is used in a statistical manner only, so all the personal details remain confidential. Just like the Nurses’ Study that unravels links between health and lifestyle choices, NARCOMS is providing similar insights into MS. But to get a complete picture it is crucial that we continue to grow the NARCOMS database by having newly diagnosed people as well as others with MS join the project. Would you consider joining?
Who’s in already?
The registry has almost 35,000 participants from all over the United States and Canada and from about 50 other countries. The age of participants ranges from 18 to over 100.
What am I expected to do?
Complete the enrollment survey online at narcoms.org or call 800-253-7884 to request a mail-in survey. After that, you will get an update survey online or by mail two times a year. Each survey typically takes less than 20 minutes to complete. That’s it. There is no cost to you. As a benefit, you are entitled to a complimentary subscription to the Multiple Sclerosis Quarterly Journal (or MSQR), an informative publication focused solely on the latest in MS research.
NARCOMS participants may also be eligible for clinical trials and other survey studies. All study notifications will come directly from us — your contact information will not be shared with anyone — and the decision is always up to you.
Need more information or enrollment material in English or Spanish? Call Desi or Davis at 800-253-7884 or e-mail MSregistry@narcoms.org.
*NARCOMS (narcoms.org) The North American Research Committee on MS is a project of the Consortium of Multiple Sclerosis Centers (mscare.org/cmsc) a trusted partner of the National MS Society.