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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.