Rett Syndrome
What is Rett Syndrome?
Rett syndrome is a unique developmental disorder that is first recognized in infancy and seen almost always in girls, but can be rarely seen in boys. Rett syndrome has been most often misdiagnosed as autism, cerebral palsy, or non-specific developmental delay Rett syndrome is caused by mutations on the X chromosome on a gene called MECP2.
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| Title | Date | Link |
|---|---|---|
| The Importance of Research on Rare Diseases | 03/15/2020 | |
| Richard Engel Celebrates Son's 5th Birthday, Shares Message to All Kids with Rett Condition | 10/03/2020 | |
| What is Rett syndrome? Richard Engel mourns death of 6-year-old son Henry | 08/21/2022 | |
| Acadia Awaits Potential Approval of First Rett Syndrome Medicine | 03/12/2023 |
Clinical Trials
CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.
Enrolling is easy.
- Complete the screening form.
- Review the informed consent.
- Answer the permission and data sharing questions.
After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.
Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.
Visit sanfordresearch.org/CoRDS to enroll.
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Physician-scientist at New York University School of Medicine and attending pediatric cardiologist at Hassenfeld Children's Hospital at NYU Langone. Primary rare disease interest: Barth...
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