University of Texas Southwestern/Children’s Health Dallas

Biobanking of Rett Syndrome and Related Disorders

Sunday, November 1, 2020

Visit Biobanking of Rett Syndrome and Related Disorders Website The purpose of this study is to advance understanding of the natural history of Rett syndrome (RTT), MECP2-duplication disorder (MECP2 Dup), RTT-related disorders including CDKL5, FOXG1, and individuals with MECP2 mutations who do not have RTT. Samples with DNA will be collected.  This study is being … Read More

Natural History Study

Sunday, November 1, 2020

Gillette Children’s Specialty Healthcare Visit Gillette Children’s Specialty Healthcare Website 1-651-325-2331 Kat Harrison 1-651-290-8707 Appointments Dr. Art Beisang (Pediatric Services) and Dr. Jill Gettings (Adult Services) collaborate with a team of specialists to offer treatment to patients with Rett syndrome. For more information on the NHS Study, contact Kat Harrison  [email protected] Travel Assistance for NHS Sites – 1-781-333-1593 Marriott … Read More

Vanderbilt University Medical Center/Vanderbilt Kennedy Center

Monday, August 5, 2019

Clinic Name: Vanderbilt Rett Syndrome Clinic Medical Directors: Cary Fu, MD & Jeff Neul, MD, PhD Clinic Address: 2200 Children’s Way, Doctors Office Tower, 9th Floor, Nashville, TN 37232 Clinic Phone: (615) 936-5536 Clinic Email: [email protected] Part of the IRSF Center of Excellence Network CLINIC WEBSITE

Monday, August 5, 2019

Rett syndrome clinical trials are available at various stages in the process. Please visit our Clinical Trial page for current enrollment status.