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Join the MDS Registry

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Join the MDS Registry

The MECP2 Duplication Foundation has partnered on an Institutional Review Board (IRB) approved patient database in partnership with a research team led by Dr. Huda Zoghbi and the Baylor College of Medicine. We are looking forward to helping create a complete picture of the syndrome, its symptoms, and the individuals it affects. The study will help build a database of information that will help researchers working towards a treatment.

We encourage all families to participate in the registry database by using the link below. Once you are on the registry page, you will need to read through the introduction and consent to take part in the study. This is an IRB approved study that is HIPPA compliant, so you can be sure your information is safe.

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Benefits of Joining

  • Participants can register with the database to be contacted for studies including the current IONIS Biomarker Study.
  • The database will help provide a way to communicate to families as new research and resources become available.
  • Your participation will help build a high quality database that will be available to researchers across the world.
  • The modular design of the database will allow for future researchers to develop additional modules and have an existing group of families to reach out to.
  • This provides a solid foundation for all future research working to treat Mecp2 duplication syndrome.
Get Started