Neurology

OPMD

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
opmd@salud.unm.edu

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.

The UNM Health System is home to the Oculopharyngeal Muscular Dystrophy (OPMD) National Registry. OPMD is a hereditary muscle disease that occurs in people from all over the world and from all backgrounds, although in the U.S it’s most common in New Mexico with people of Hispanic ancestry. It typically begins in adulthood, often when a person is over 40 years old – but younger individuals sometimes show signs. OPMD is autosomal dominant, meaning the disease can be passed down from parents to children. Children of an affected parent have a 50/50 chance of inheriting the disease.

Background on OPMD

The majority of families with OPMD in New Mexico originated in the Rio Grande basin in Northern New Mexico. OPMD is believed to be the most common muscular dystrophy in the state.

The purpose of the National OPMD Registry is to:

  • Understand more about how OPMD affects people’s lives.
  • Find out who is willing to be contacted for future studies on OPMD.
  • Establish communication between researchers and OPMD patients and families.

When you take part in the registry, OPMD registry staff will periodically send information to you regarding new clinical studies and research developments in OPMD.

The National OPMD Registry, which is based in Albuquerque, collects and stores medical information, family history and other related information from individuals for medical research. This information (without identifying participants' personal information to protect privacy) might be shared with other researchers.

We acknowledge the University of Rochester's National Registry of Myotonic Dystrophy & FSHD Patients and Family Members for serving as a model for the National OPMD Registry.