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

Participating in the Study

You may be eligible for this study if you have OPMD, if you may develop OPMD in the future, or if you are related by blood to someone with OPMD. You must be at least 18 years of age and English-speaking to participate.

Your participation in the study would involve three visits to the University of New Mexico spread over several months. The study involves a blood draw; videofluoroscopy swallowing study; interview; magnetic resonance imaging of muscles; and various tests of your eyelids, swallow strength, muscle strength, and walking ability. You would also complete several questionnaires about your health.

The study involves 15 hours of your time. You would receive compensation in the amount of $105 for completing the three study visits.

Participation in this study is completely voluntary. There are no direct health benefits to participants.