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KKI Weblink for researchers in Rett Syndrome
Creation of a Weblink for Researchers in Rett syndrome to request de-identified data from clinical evaluations collected on our patients with Rett syndrome (RTT) in The Natural History study "Pathogenesis of Rett Syndrome (#03-07-30-10). Participants will not be contacted for any new information. The data would be deidentified, without date of birth, and will be grouped together based on types of MeCP2 mutation. Genetic information will also be included in the data as types of mutation are an essential parameter. The database would be ongoing as we would add new data as it becomes available.
The parameters available to be shared with Researchers include: Mutation, Age at Exam, Neurological Evaluation, Head Circumference, Gait, Seizures, Scoliosis, Speech, Respiration, GI dysfunction, Hand use, Sleep, Behaviors, and Vasomotor abnormalities.