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

How to Join the OPMD Registry

You are eligible to join 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. There are several ways to obtain a registry enrollment packet:

  • Download and print the forms (see the box, right).
  • Request the forms by mail. To request a paper application, email or call us toll free (see the contact information, left). Due to privacy restrictions, we cannot accept the returned forms as email attachments. We will send you a postage paid envelope to return the forms.

For assistance in completing forms or any questions regarding their completion or return, please email or call us. We are here to answer your questions.

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.