National Registry for Oculopharyngeal Muscular Dystrophy Patients and Family Members

Principal Investigator
Sarah Youssof, MD
(HRPO #13-331)

Department of Neurology
MSC 10 5620
1 University of New Mexico
Albuquerque, NM 87131

Phone: (505) 272-6354
Toll Free: (855) 676-3721

Information for Participants

Research and Outcomes

Outcome Measures in Oculopharyngeal Muscular Dystrophy

Currently, the best ways to measure disease severity or progression in OPMD are not known. This research study will evaluate a large set of tests to see which are most useful for measuring the effects of OPMD. Read about this MDA clinical research training grant (Muscular Dystrophy Association)

OPMD in New Mexico

The OPMD cluster among Hispanics in New Mexico is likely the largest cluster of OPMD in the United States and one of the largest in the world. The majority of patients in New Mexico were born in the Rio Grande river basin in Northern New Mexico. Researchers have not identified the source of the OPMD cluster. The disease may have been brought into New Mexico by Spanish colonists in the 16th century or by French-Canadian fur trappers in the 19th century. The cluster could also have been the result of a spontaneous mutation.

This cluster was identified through the efforts of a group of medical professionals from UNM Health Sciences Center and the New Mexico VA Health Care System. After discovering their common interest in OPMD, they combined their findings, attracted additional expertise and in November 2001, published their findings in the Journal of the American Medical Association (JAMA).

UNM OPMD Conference Presentations

Other resources for researchers