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Researchers at the University of Miami report that Hispanic/Latinos (primarily of Caribbean ancestry) are younger at diagnosis and have more mobility impairment than non-Hispanic white people who have MS.
Further research to understand these differences will help improve access to care and may help pinpoint the underlying cause of MS.
Athena Hadjixenofontos, PhD, Jacob McCauley, PhD, and colleagues at the University of Miami published results in Neuroepidemiology (2015;44(4):262-8). Dr. McCauley was funded by a research grant from the National MS Society.
These researchers are continuing this research and are seeking to recruit Hispanic/Latinos with MS in Florida and California for these studies. See contact information below.
Background: For decades, many healthcare professionals assumed that MS was uncommon in the Hispanic/Latino population. But recent studies are suggesting an increase in the number of people throughout Latin America who have MS. Previous findings supported by the National MS Society have called attention to the need to better understand unique characteristics of MS in this population and the need for more accessible and culturally relevant healthcare and social services. Improving access to quality MS care across the cultural and socioeconomic spectrum means understanding how each group experiences and perceives the disease and identifying the factors that limit access to care. Also, understanding genetic and clinical differences between ethnic groups can yield important clues to the cause of MS.
The Study: This team used clinic visits and review of medical records to evaluate clinical characteristics in 312 Hispanic/Latino people with MS primarily of Carribean ancestry, and 312 non-Hispanic white people with MS. They ascertained age at first symptom, age at diagnosis, type of symptoms at disease onset, disease course, and type of symptoms during disease course.
The results suggest that age at first symptom was not significantly different between the two groups, but that Hispanic/Latinos were significantly younger at diagnosis. Within the Hispanic/Latino group, people born in the United States were significantly younger at first symptom and at diagnosis. The team also found that Hispanic/Latinos with a relapsing course had increased mobility impairments. However, this was not the case among those with a progressive course.
Results were published in Neuroepidemiology (2015;44(4):262-8).
Comment: This study pinpoints a few important differences in the experience of MS between Hispanic/Latinos and non-Hispanics. Further research is necessary to understand if these differences indicate underlying cultural, environmental, or genetic differences. Understanding these differences is crucial to providing access to comprehensive and quality MS care for everyone affected by MS, and for providing new clues to the cause of MS.
How to Participate in This Research: Dr. McCauley’s team is continuing to gather information, in collaboration with researchers at the University of Southern California (Dr. Lilyana Amezcua) and the University of California at San Francisco (Dr. Jorge Oksenberg). They are recruiting individuals of Hispanic/Latino background. Participants will be asked about their ancestry and clinical characteristics through in-person interview/questionnaire. A single blood sample for gene typing will also be obtained and sent for analysis. Participation is usually a single visit. To participate in these studies, please contact:
USC Multiple Sclerosis Center
1520 San Pablo Street, Suite 3000
Los Angeles, CA 90033
Principal Investigator: Dr. Lilyana Amezcua
Study Coordinator: Jose Aparicio
UCSF Department of Neurology
675 Nelson Rising Lane Box 3206
San Francisco, CA 94158
Principal Investigator: Dr. Jorge Oksenberg
Study Coordinator: Stacy Hatcher
John P. Hussman Institute for Human Genomics
Multiple Sclerosis Study
1501 NW 10th Avenue, BRB-3rd Floor
Miami, FL 33136
Principal Investigator: Dr. Jacob McCauley
Study Coordinator: Patricia Manrique
Please note that a site visit is necessary to participate in this study.
Read more: The National MS Society’s Hispanic/Latino Advisory Council advises the Society on strategies and programs to overcome cultural barriers and make resources more available to this community.
Read more about this council and about resources for Hispanics/Latinos with MS.
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