is supported in part by the Consortium of Multiple Sclerosis Centers (CMSC) and the CMSC Foundation.
In January 2008, NARCOMS
mailed letters to all 720 African Americans actively enrolled in the Registry.
is a project of the Consortium of Multiple Sclerosis Centers (CMSC).
provided summary data from their 2012 survey reported separately by Veteran status (self-reported).
In just one example of the research that NARCOMS
is facilitating, Dr.
registry sends questionnaires every six months to update participant data and any changes in their state of health or their treatment.
Strategies to invite potential participants to contact the researcher may include posting on appropriate Web sites such as the National MS Society Web site and using the NARCOMS
Patient Registry database of individuals with MS.
People with MS who register with NARCOMS
fill out a detailed questionnaire.
Two posters are to be presented on analysis of data from the NARCOMS
The proposed registry would probably utilize a number of existing databases, including those associated with Medicare, Medicaid, the Department of Veterans Affairs, NARCOMS
, and private insurers, to speed data collection and reduce costs.
patient registry: A resource for investigators.
data indicate that one of the most frequent cited reasons for discontinuing a DMT is perceived lack of treatment benefit (Vollmer, 2002).