Status message

Active context: kki_bg_colors_yellow

KKI Weblink for researchers in Rett Syndrome

Principal Investigator:

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.

March is Brain Injury Awareness Month

Brain Injury Awareness Month

Help raise awareness and support for brain injury research, treatment and education. Learn more about our program.


Read inspiring stories, news and updates about the Institute's patient care, research, special education, professional training, and community programs.