at 300 Longwood Ave, Boston , 02115
Ranked #1 on the Best Children's Hospitals Honor Roll for 2014-15 by U.S. News, BCH has one of the largest Rett Syndrome Programs in the country.
The Rett Syndrome Research Program at Boston Children’s Hospital is committed to pursuing novel research to improve the lives of children and adults living with RTT. Our research projects focus on Rett syndrome and Rett-related disorders, such as, CDKL5, FOXG1 and MECP2 Duplication Syndrome. We collaborate with local scientists from MIT and Harvard Medical School and are partnering with other Rett Syndrome Centers across the country. The Rett Syndrome Research Program is led by Dr. Walter E. Kaufmann, who is also the Director of the Rett Syndrome Clinical Program at Boston Children's Hospital. The Research Team at Boston Children’s is made up of dedicated researchers working to better understand the underlying biology of the disease and identify innovative treatments to improve the quality of life of individuals with RTT. Team members are available to support families and study participants as they partake in our many research studies, as well as ensure they have a positive experience while working with us to further our understanding of RTT. Our current research studies include: - Rett Syndrome Natural History Study - Phase 2 IGF-1 clinical drug trial - Early Detection of impaired cortical function in Rett Syndrome: new biomarkers and strategies for recovery - Development of a Behavioral Outcome Measure for Rett Syndrome - Identification of NF kappa B Inhibitors as a Potential Treatment for Rett Syndrome We encourage all families to contact us if they are interested in research opportunities. If you would like to receive periodic updates on our research projects or be notified if your child may be eligible for one of our studies, please email us to be added to our patient registry. *Please note: Although our research team works very closely with the Rett Syndrome Clinic, we are a separate entity. If you are interested in learning more about the Rett Syndrome Clinic, you may visit their website at http://www.childrenshospital.org/centers-and-services/rett-syndrome-program or contact them via phone at (617) 355-8994.* To find out more about Rett Syndrome please visit RettSyndrome.org. As stated on their website, RettSyndrome.org works “to fund research for treatments and a cure for Rett syndrome while enhancing the overall quality of life for those living with Rett syndrome by providing information, programs, and services.” Through their website you can find fantastic resources such as: - Support for new diagnoses - Fundraising and event information - Clinic information for the U.S., Canada, and Australia - Advice on various aspects of life with RTT like communication and schooling - Research and publication information For families in the New England area, the Rett Syndrome Association of Massachusetts (RSAM) provides great information on upcoming events in the area as well as news updates within the Rett community. Together RSAM and the Rett Syndrome Research Program at BCH host annual lecture series for parents as well as the Blue Sky Day event every October. You can find out more information on RSAM here: http://www.rettsyndromemass.org/Pages/default.aspx
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