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

Welcome to the National OPMD Registry

Join the registry

You are eligible to enroll in the OPMD registry if you have OPMD, may develop OPMD in the future, or are related by blood to someone who has OPMD. You must be at least 18 years old to join. The registry staff will review the information you provide to determine whether you qualify for enrollment. Join now.

Oculopharyngeal Muscular Dystrophy (OPMD) is a hereditary muscle disease that occurs in people from all over the world and of all backgrounds. OPMD is more common in certain regions of the world. OPMD typically begins in adulthood, often when a person is past the age of forty years. Many people in the same family can be affected by OPMD, which is passed down from parents to children. Children of an affected parent have a 50/50 chance of inheriting the disease.

The largest known geographic cluster of individuals with OPMD in the United States is in New Mexico, among people of Hispanic ancestry. The majority of families with OPMD in New Mexico originated in the Rio Grande river basin in Northern New Mexico. The disease may have been brought to 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. OPMD is believed to be the most common muscular dystrophy in the state of New Mexico.

The purpose of the National OPMD Registry is to understand more about how OPMD affects peoples lives, to find out which individuals would like to be contacted for future studies on OPMD, and to establish communication between researchers and OPMD patients and families. The registry staff will periodically send information to participants regarding new research developments in OPMD as well as clinical studies that may be available.

The National OPMD Registry collects and stores medical information, family history and other related information from individuals for medical research. Such information (without participants' personal identifying information) may be shared in the future with other researchers, while protecting individuals' privacy.