Welcome to the OPMD Association Patient Registry Page. Our goal is to communicate research initiatives and information to OPMD Community members by providing opportunities to participate in OPMD research. Registry participation is voluntary and is your opportunity to advocate for OPMD research.

1. What is a patient registry?

A patient registry is a systematic collection of data about individuals who share a certain disease or condition.

• Hub for patients to be informed of research studies or clinical trials
• Secure means for participants to share disease data with researchers
• Central resource for researchers for research participant recruitment

2. Why participate in an OPMD Patient Registry?

• Patient participation helps enhance existing knowledge of OPMD.
  The more data that is available to the scientific community, the more likely researchers, biotech firms, and pharmaceutical companies will want to become involved in developing therapies for OPMD.
• There is strength in numbers!
  We know that the OPMD Community is undercounted and geographically dispersed. By understanding how many people (globally) have OPMD, we can make a case for increased OPMD attention and research funding.
• Become a research partner.
  Enhance the possibility of drug/therapy development or repurposing of existing drugs for OPMD.
• Facilitate improved OPMD clinical care
  Support understanding of OPMD natural history by monitoring disease progression to identify which symptoms need more attention.

You are welcome to participate in multiple patient registries. Note, if you discover an OPMD registry or research study, please share with us, Contact Us