NARCOMS Registry: A Multiple Sclerosis Registry (NARCOMS)
|The safety and scientific validity of this study is the responsibility of the study sponsor and investigators. Listing a study does not mean it has been evaluated by the U.S. Federal Government. Know the risks and potential benefits of clinical studies and talk to your health care provider before participating. Read our disclaimer for details.|
|ClinicalTrials.gov Identifier: NCT01018537|
Recruitment Status : Recruiting
First Posted : November 23, 2009
Last Update Posted : December 1, 2021
This project is based on the idea that we can learn about the complexities of MS by following disease and treatment patterns in a large group of people over several years. The information gathered is used for research only. Results are presented in summary form only. All details submitted by registry participants is strictly confidential.
To participate in NARCOMS complete the baseline enrollment survey online through www.narcoms.org (or directly using the following link: https://redcap.link/py2rnyyn) or you can request a mail-in survey be sent to you by emailing MSregistry@narcoms.org. You will be asked to update your information, online or by mail, twice a year. Each update survey typically takes less than 20 minutes to complete.
There is no cost to participate. For your participation you are offered a free subscription to the NARCOMS quarterly magazine, NARCOMS Now. NARCOMS Now provides a reliable source of information about the latest in MS research and disease management. You can stop participating in the registry at any time.
You may also receive additional surveys or information on clinical trials. You are not obligated to participate and these additional studies will always come directly from NARCOMS. Your contact information will not be shared or sold to other parties.
|Condition or disease|
The data coordinating center, located at the University of Texas Southwestern Medical Center, maintains NARCOMS, the worlds largest voluntary, patient driven MS registry. The registry involves personnel from at least three other sites in the US and Canada (Cleveland Clinic Foundation, University of Alabama at Birmingham, and the University of Manitoba in Canada). Over the past 20 years more than 41,000 people with MS across the U.S., Canada and over 50 other countries, including over 4,000 Veterans, have participated in the registry by submitting their health-related data by mail or online. Registry data have been featured in over 100 peer-reviewed journal articles, scientific posters and presentations. These reports have provided information to guide new research. They also provide evidence supporting the approval of new drugs in the fight against MS.
The North American Research Committee on Multiple Sclerosis (NARCOMS) is supported in part by the Consortium of Multiple Sclerosis Centers (CMSC), a not-for-profit professional organization for multiple sclerosis (MS) healthcare providers and researchers involving 198 participating centers of the MS treatment and research community.
|Study Type :||Observational [Patient Registry]|
|Estimated Enrollment :||50000 participants|
|Target Follow-Up Duration:||10 Years|
|Official Title:||NARCOMS Global Multiple Sclerosis Registry: A Long-Term Study to Facilitate Research in Multiple Sclerosis|
|Study Start Date :||January 1996|
|Estimated Primary Completion Date :||December 2050|
|Estimated Study Completion Date :||December 2050|
- Disease progression over time of follow up [ Time Frame: up to 15 years ]Disease Progression measured using the Patient Determined Disease Steps
- Contributing factors to change in MS disease status [ Time Frame: up to 15 years ]Factors include, but not limited to, demographics, lifestyle and clinical characteristics
- Medication usage in multiple sclerosis [ Time Frame: up to 15 years ]Disease modifying therapy use is collected from participants
To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.
Please refer to this study by its ClinicalTrials.gov identifier (NCT number): NCT01018537
|Contact: NARCOMS Team||1-800-253-7884||MSregistry@narcoms.org|
|United States, Texas|
|UT Southwestern Medical Center||Recruiting|
|Dallas, Texas, United States, 75390-8806|
|Contact: NARCOMS Team 800-253-7884 MSregistry@narcoms.org|
|Principal Investigator: Amber Salter, Ph.D.|
|Study Director:||Robert J. Fox, M.D.||Mellen Center for MS / Cleveland Clinic|
|Principal Investigator:||Amber Salter, Ph.D.||University of Texas Southwestern Medical Center|
|Study Director:||Gary R Cutter, Ph.D.||University of Alabama at Birmingham|
|Study Director:||Ruth Ann Marrie, M.D., Ph.D.||University of Manitoba|