Breanna Bullock, MHSM––NARCOMS Database Coordinator, Barrow Neurological Institute,Arizona; Tuula Tyry, PhD, MAED–NARCOMS Program Manager, Barrow Neurological Institute, Arizona

Introduction
According to the 2007 estimate by the National Multiple Sclerosis Society, the number of people with MS currently living in the US is about 400,000. As of February 2007, more than 31,000 (8%) of them had enrolled in the CMSC/NARCOMS MS Patient Registry. Participants in the Registry have volunteered to facilitate MS research by reporting information about their disease through surveys administered twice a year by mail or online. The data collected are entered into a secure database maintained at Barrow Neurological Institute in Phoenix, Arizona. The purpose of this national registry is to expedite and further research on MS. This is done by notifying participants about clinical trials and other MS research projects open for enrollment and by conducting epidemiological studies using the vast amount of data collected over the past 10 years. NARCOMS data have already been featured in more than 60 scientific articles, posters, and presentations.

Since personal information about Registry participants is not released to any third party, investigators seeking to recruit NARCOMS participants for studies on MS are required to initiate the contact through the NARCOMS office. The administrative staff queries the database to find candidates meeting the inclusion criteria for the study in question and notifies those participants directly about the opportunity. Participants’ decision to contact the investigators or to accept an invitation to get involved in a research study, however, is entirely up to each participant and does not affect involvement in the Registry. Nevertheless, all Registry participants are encouraged to complete the update surveys as thoroughly as possible, regardless of whether they are interested in being recruited or not. Only a sufficiently large number of complete, continuous datasets make it possible to detect general trends over time. The purpose of this summary report is to briefly describe the current status of the database.

Participant Status
The Registry database consists of data collected since 1996. Of the 31,828 unique participants, 15,773 (49%) are currently active and continue completing the semiannual update surveys. The remaining 16,297 (51%) of the participants have been marked as inactive for a variety of reasons (see Figure 1). The most prominent reason is a prolonged period of not responding to any of the update surveys (60%). Although an occasional gap in the follow-up cannot always be avoided, continuous longitudinal information is important in many analyses. Another major reason for inactive status is loss to follow-up (31%), usually due to lack of a forwarding address after a move. All Registry participants are urged to notifythe NARCOMS office about any change in contact information, either by phone, email or by submitting updated contact information online at the secure Web site. Inactive participants wishing to continue in the Registry may do so after first contacting the administrative office.

Enrollments
For the past few years, the focus of the NARCOMS program has been on ensuring the retention of existing registrants and encouraging consistent participation. Figure 2 shows the adherence rate of participants since the creation of the Registry. As of February 2007, 40% or more of the participants enrolled in any given year had remained actively involved in the NARCOMS program. One of the goals for this year is to increase enrollment throughout the country, with the objective of ultimately recruiting at least 10% of the MS population in the US. Figure 3 illustrates the most frequently reported sources of enrollment in 2006.

Paper Questionnaire vs. Internet
With online services and activities becoming more commonplace, many people are getting comfortable using their computers in secure Web environments. The same holds true for NARCOMS participation. Since 2000, the proportion of online registry participants has steadily increased. Currently over 10,000 participants (67%) have chosen to complete their update surveys on our secure Web site. The response rate among online users remains slightly lower than among those completing update surveys on paper (53% vs. 58%), at least partially due to filters and firewalls blocking emailed notifications about the surveys. However, having brought this potential obstacle to the attention of the participants and reminding them to list narcoms@chw.edu in their computer’s address book we are anticipating this problem to diminish.

We continue to encourage those participants with internet access to consider completing their update surveys online. Electronic data transfer is very time and cost effective, thus allowing us to accomplish more with the limited resources allocated to the program. We realize, however, that online participation is not a feasible option for everybody and will continue to offer the update surveys in paper format as well. Either way, the time and effort extended by those participating in the Registry are genuinely appreciated.

Geographic Distribution
Currently, all 50 states in the US are represented in the Registry. Figure 4 illustrates the geographic distribution of all active participants in the US.California, New York, and Pennsylvania have the greatest number of active Registry participants. Table 1 provides a list of the 10 states with the greatest number of active NARCOMS participants. Although most of the participants are US residents, a small proportion (1.4%) of active registrants report living outside the US.

Demographics
Basic demographic information is collected in the enrollment questionnaire and changing information updated with the semi-annual surveys. Table 2 indicates demographic information for participants within the US. Nearly three-quarters of Registry participants are female. The majority of participants (62%) are between the ages of 45 and 64. Another 21% fall into the 35 to 44 age range. Almost 90% of registrants are non-Hispanic Whites, while an additional 4% of people report African American ethnicity and 2% indicate Hispanic heritage. The vast majority of participants (97%) report having some form of health insurance including Private, Medicare, Medicaid, CHAMPUS or VA.

Disability and Treatment Status
In the Fall 2006 update survey, 9,881 people responded to a Patient-Determined Disease Steps (PDDS) question which addresses perceived level of walking ability. Table 3 shows that nearly half of respondents (47%) report that they normally require no assistance with their walking. The remainder indicate that they utilize some type of support to help them move about, ranging from occasional use of a cane to regular use of a wheelchair or scooter. Table 3 also indicates the drug therapies that responders reported using in the 6 months prior to taking the survey.

More than 70% of them responded that they had been on a disease modifying therapy and 8% indicated that they had been treated with immunosuppressant chemotherapy. Overall, 22% reported not being on any disease modifying or immunosuppressive therapy.

Conclusion
The Registry has now been operating for 10 years and it continues to grow and evolve. Participants’ contributions will always be the lifeblood of the program. We sincerely appreciate the time that participants and their families are willing to put into thoroughly answering the survey questions and participating in the studies to which they are invited. All of your help continues to contribute to the movement toward a cure for MS––and for that we truly thank you.

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