2007 Registry Update

Patricia Davis, MS, NARCOMS Database Coordinator, Barrow Neurological Institute, Arizona; Tuula Tyry, PhD, MAEd, Program and Editorial Manager, Barrow Neurological Institute, Phoenix, Arizona

Introduction
CMSC/NARCOMS is a long-term MS research project driven by voluntary enrollee participation. Participants are asked to complete updates twice a year by mail or a secure online survey. The NARCOMS Patient Registry is designed to follow participants over a long-term period of time. Therefore, it is crucial to the program that enrollees continue to actively participate in the twice a year updates, even if they have not experienced any major changes. The data are used to expedite further research on MS by notifying participants about clinical trials and MS research projects and by conducting research studies using the data collected since 1996.

At the end of 2007, the NARCOMS MS Patient Registry has almost 33,000 enrollees. The following pages summarize the current status of the database.

Active Participation and New Enrollment
Of the 32,831 unique enrollees, 16,590 (51%) are currently active and continue to complete the semi-annual update surveys. Table 1 illustrates how long currently active NARCOMS participants have been a part of the database.

Participants are assigned to inactive status for a variety of reasons, the most common reason being an extended period of non- response to the surveys. The second most common reason is losing contact with a participant, usually due to a change of mailing address or e-mail address. Participants are urged to notify the NARCOMS office if there is a change in any contact information, including mailing address, telephone number or e-mail address. Participants can update their contact information by calling the NARCOMS office or by logging on to our secure Web site with their assigned username.

Update surveys are available in paper format and online. Approximately 61% of active participants choose to complete their surveys online using the NARCOMS secure Web site. Participants interested in switching from paper survey to online survey should contact the NARCOMS office to obtain a username and password.

In addition to promoting active participants to complete their update surveys, it is important to continue growing the database with new enrollees. Figure 1 illustrates sources of new enrollments in 2007. The majority of new enrollees learn of NARCOMS by way of the Internet, National MS Society and its chapters, or word of mouth.

Demographics
Table 2 summarizes demographic information that is collected during the enrollment process. As the table shows, over 70% of NARCOMS enrollees are female. Most enrollees are currently in the 45-54 and 55-64 age groups. Almost 90% of enrollees are white (not Hispanic) and the majority of enrollees reported having at least one type of health insurance coverage at time of enrollment.

The Registry has active participants in all 50 US states, and over 200 active participants outside the US. Figure 2 illustrates the geographic distribution of US active participants. Table 3 shows the states with the greatest number of active participants. California, New York, Pennsylvania, and Florida currently have the greatest number of active participants.

Disability and Treatment Status
A total of 10,688 people responded to the Spring 2007 update survey. The data collected included Patient Determined Disease Steps (PDDS) which indicates the participant’s perceived level of walking ability. Table 4 summarizes the reported PDDS levels. Forty-five percent (45%) of respondents reported that they require no assistance with their walking. The remainder reported use of walking support, ranging from occasional use of a cane to regular use of a wheelchair or scooter.

Respondents were also asked to report their immunological therapy treatment in the update survey. Table 4 exhibits the percentage of participants on FDA approved disease-modifying therapies. Some participants report using a combination of two or more treatments.

Conclusion
As the Registry continues to expand with more participants and more longitudinal data on active participants, we continue to build upon the strength of the database and its ability to serve as a valuable tool in MS research. The program could not continue without the participants submitting their update surveys twice per year. We truly appreciate the time and effort that registry participants and their families continue to put into completing the update surveys.

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