Hispanic/Latino NARCOMS Participants
Eileen Abarca, BS––NARCOMS Bilingual Research Coordinator, Barrow Neurological Institute, Arizona; Patricia Davis, MS––NARCOMS Database Coordinator, Barrow Neurological Institute, Arizona; Tuula Tyry, PhD, MAEd––Program and Editorial Manager, Barrow Neurological Institute, Phoenix, Arizona
Introduction
North American Research Committee on Multiple Sclerosis (NARCOMS) program, a project of the Consortium of Multiple Sclerosis Centers (CMSC), is a long-term research project designed to facilitate research in the broad field of multiple sclerosis (MS).
One of the objectives of the program is to provide up-to-date information about research studies and important findings regarding treatment, and to positively impact the lives of those affected by MS. In the past, however, we have not been able to reach a large segment of the U.S. population due to a language barrier.
In 2008, as a part of ongoing epidemiological and clinical research and educational initiatives relating to MS, CMSC/NARCOMS has launched a bilingual project to expand the Hispanic/Latino cohort of the Registry and, for the fi rst time, to include participants not fl uent in English. During its fi rst year, the Spanish Cohort project will launch a variety of recruitment and out-reach efforts within the Hispanic/Latino communities across the US. We will enthusiastically welcome any and all assistance you might be able to provide. Please also note that the project is scheduled to expand to Latin American countries starting in 2009.
The Administrative Office of NARCOMS already has bilingual staff available to assist Spanish speaking Registry participants and investigators. From now on we will offer both the enrollment and update questionnaires in Spanish in addition to English, both in print and online. Some preliminary data on the emerging Hispanic/Latino cohort is already available based on data collected since 1996: more than 33,000 people with MS have submitted data to the Registry, using the English version of the questionnaires. This article provides a brief summary of the 710 Registry participants who have identified themselves as Hispanic or Latino.
Active Participation
The NARCOMS Patient Registry is designed to follow participants over a long period of time. Therefore, it is vital to the program that participants continue to actively participate in the update surveys. Of the 710 Hispanic/Latino enrollees, 308 (43%) are currently active and continue to complete the update surveys twice per year. Table 1 shows the length of time in NARCOMS Registry for currently active Hispanic/Latino participants.
The two most common reasons for participants to be considered non-active is not responding to any update surveys for 2 years and out-dated contact information following a move. As most of you already know, all US participants have the opportunity to complete the update surveys online or in paper format. Previously enrolled Hispanic/Latino participants can switch to completing the update surveys in Spanish, if it is their preferred language. We encourage you to spread the word by letting your friends and family know about this new option. We would also like to remind all participants to notify the Registry of any changes in their mailing address, phone number, and email address.
Demographics
De-identifi ed demographic data are essential in all ongoing research studies for statistical purposes and could also reveal patterns relating to the incidence and prevalence of MS. Table 2 summarizes demographic data for Hispanic/Latino enrollees. As seen in the table, 73% of NARCOMS Hispanic/Latino participants are women. This is quite similar to the proportion (72%) of women among White Non-Hispanic Registry participants. Most Hispanic/Latino enrollees are currently in the 35-44 and 45-54 age groups, while White Non-Hispanic enrollees tend to be in the 45-54 and 55-64 age groups. The average age among the currently active Hispanic/Latino participants is 47 + 11 years.
A total of 149 (21%) of all the Hispanic/Latino enrollees are veterans or on active duty. The majority of enrollees (68%) reported having private health insurance coverage, somewhat less than White Non-Hispanic NARCOMS participants (78%). More importantly, 6% reported not having any health insurance coverage while the corresponding percentage among White Non-Hispanic participants is less than 2%.
The Registry has active Hispanic/Latino participants in 40 U.S. states, including Puerto Rico. As seen in Table 3 the states with the largest number of active Hispanic/Latino participants are Florida, California, and New York.
Source of MS Care
A total of 236 Hispanic/Latino participants have provided information on whether they have ever been treated or evaluated in a center that specializes in MS. A total of 114 (48%) responded having been treated at an MS center. The percentage is quite similar to that among 10,580 active White Non-Hispanic participants, as 5,150 (49%) reported that they have been treated at an MS clinic.
Current Treatment Status
A total of 154 Hispanic/Latino participants responded to the update survey in fall 2007 and reported on their treatment status during the past 6 months. As seen in Table 4 , 75% of the men received either mono-therapy or combination therapy, while 26% reported no immunological therapies in the last 6 months. Eighty percent of females reported mono-therapy or combination therapy in the last 6 months, while 19% reported no immunological therapies. Overall, 79% of the Hispanic/Latino responders were on therapy and 21% reported no immuno-therapy. Among White Non-Hispanic responders, the corresponding percentages were 71% and 29%.
Conclusion
Multiple Sclerosis affects people regardless of race and ethnicity, including those of Hispanic/Latino ancestry. The ever expanding NARCOMS database serves as a tool to investigate cultural, genetic, and environmental factors associated with MS. This line of research could ultimately reveal links to the reported variations in worldwide incidence and prevalence of MS. The CMSC/NARCOMS Spanish Cohort project is designed to provide a unique opportunity for all Latinos with MS to join forces with researchers and clinicians to facilitate MS research.