Global OPMD Patient Registry
To create this global registry, the OPMD Association has partnered with CoRDS (Coordination of Rare Diseases at Sanford) Research which hosts the largest international rare disease registry database. CoRDS provides a free HIPPA compliant OPMD Registry.
Why partner with CoRDS?
- CoRDS registry is solely focused on rare diseases, such as OPMD.
- It is completely free for all parties involved (participants, researchers, and industry partners).
- The OPMD Association has worked closely with CoRDS to prepare a research ready questionnaire.
- Enrollment takes little time and can be done online, by paper questionnaire, or by phone.
- In addition to English, OPMD questionnaires will eventually be available in Spanish and French.
Who can participate in this registry?
- Individuals with an official OPMD diagnosis through genetic testing.
- Individuals with a family history of OPMD.
How safe is my information?
- Personal health information, privacy and security are protected by law.
- Your consent is needed to share your information.
- Personal data is de-identified which requires removal or altering of participant information such as name and contact information.
- Identifiable information can only be accessed by CoRDS personnel.
- Electronic information is stored in the CoRDS secure patient enrollment site.
- Hard copy information is stored in a locked fireproof cabinet.
- In the unlikely event that a breach occurs, CoRDS personnel will contact you directly.
How do researchers find me?
- If a researcher would like to contact a registry participant, the researcher must go through CoRDS.
- CoRDS will contact the participant who can then agree or decline to participate.
You may opt out of the registry for any reason at any time.
To begin the registry process, click on the button below.
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