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NARCOMS Patient Registry helps research, patients

   
 
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On the February MS/Cancer support group conference call, participants learned about the North American Research Committee On Multiple Sclerosis (NARCOMS) Project, what services it provides and the need for MS patients to participate.  This self-help support group is sponsored by the National MS Society and the American Cancer Society.

 

Dr. Tuula Tyry, NARCOMS program manager, said the organization's main purpose is to expedite multi-center research on multiple sclerosis. To accomplish that goal, NARCOMS has developed a voluntary MS patient registry that is the largest of its kind in the world. As of February 2011, registry enrollment is more than 35,000, and new participants continue to join in.

 

People with MS are asked to register to provide data about their health, background, demographics and other information. Registry participants, whose identity remains confidential and separate from the data they submit, are then asked to update their information twice a year by mail or online.

 

NARCOMS makes the de-identified data available to clinicians and researchers for epidemiological studies. NARCOMS also matches registry participants with research studies and clinical trials and then lets them know about studies in their area. When notified that he or she is a potential candidate for a research project, the person can always choose whether or not to participate.

 

Tyry explained, "Perhaps a clinician is investigating fatigue and sleep issues in people with MS. He or she can ask us to search among the 35,000 profiles in our database to find people who qualify for that project. NARCOMS then notifies those registry participants about the study, and they can opt in or out of it."

 

"Over the past 15 years we have gathered a vast amount of information about MS in this unique data base," Tyry said. "However, to get a true picture, it continues to be very important to get information from a wide range of people - including those with co-existing medical conditions, such as cancer."

 

Some topics or questions in the surveys may not seem relevant to all responders, but every single response is important for comprehensive statistical analyses.

 

The database has proven very useful for researchers who need to include supporting data when submitting funding proposals for large scale studies. NARCOMS offers fast access to such reference data.

 

Margaret Barney, founder of MSplus, said, "I encourage MSplus members to enroll. Our participation adds to the database information about those who have been dually diagnosed with MS and cancer."

 

Tyry noted that with both skin and invasive cancers included, the portion of dual-diagnosed MS and cancer patients was 6 percent among the spring 2005 update survey responders and 10 percent in 2010. Further analyses are under way.

 

Those who enroll in the NARCOMS Registry receive four times a year the Multiple Sclerosis Quarterly Report (MSQR), which includes original review articles, NARCOMS news, breaking news and clinical trials in progress and open for enrollment.

 

"We are currently in the process of changing the name and format of our quarterly report, but the basic elements will remain. We want to continue giving something concrete back to the participants because we appreciate the time and effort it takes to fill out the surveys," Tyry said.

 

It takes about 20 minutes to fill out the NARCOMS form. To register, call 800-253-7884 for a mail-in survey form or complete the form online at www.narcoms.org

 

Tuula Tyry, Ph.D., MAED, earned her Master of Science degree in Exercise Science at University of Jyväskylä in Finland. She received a Fulbright scholarship for doctoral studies in the United States. Dr. Tyry completed her Ph.D. in human performance at Oregon State University and earned a Master of Arts in Adult Education at University of Phoenix, focusing on distance education and online learning. Dr. Tyry joined the NARCOMS Project as program manager in 2004 and has coauthored more than 20 scientific publications with other NARCOMS researchers.

 

NARCOMS is a project of the Consortium of Multiple Sclerosis Centers (CMSC).

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