The Natural History Study

The Natural History Study collects information about the clinical features and quality of life of Rett syndrome, MECP2 Duplication Syndrome, and Rett-related disorders. This information allows us to better understand how Rett syndrome progresses over time and is essential in stimulating more research and shaping future clinical trials.

Who can participate?

Girls and boys of all ages with Rett syndrome (classical or atypical), MECP2 Duplication, or related disorders that involve mutations in CDKL5, FoxG1, and other MeCP2 mutations that don’t fulfill the consensus criteria for Rett syndrome.

How do I enroll?

You will need to contact the study coordinator at the participating institutions by phone or by e-mail. All sites are listed below.

Read more about the NHS


Address: 1720 - 2nd Avenue South CIRC 320E, Birmingham, Alabama 35294-0021
Phone: 800-822-2472, Ext 7

Rady Children's Hospital San Diego

Address: 8001 Frost Street, San Diego, CA 92123
Phone: 858-966-6458

UCSF Benioff Children's Hospitals

Address: 744 52nd Street Oakland, CA 94609
Phone: 510-595-5458

Children’s Hospital Colorado

Address: 13123 East 16th Avenue, #B-155, Aurora, CO 80045
Phone: 720-777-4363

Rush University Medical

Address: 1725 W. Harrison St., Suite 710, Chicago, IL 60612
Phone: (312) 942-4036

Boston Children’s Hospital

Address: 300 Longwood Avenue, Boston, MA 02115
Phone: 617-355-2063

Gillette Children's Specialty Healthcare

Address: 200 E. University Ave., St. Paul, MN 55101
Phone: 651-229-3897

Washington University in St. Louis

Address: 4444 Forest Park Avenue, Suite 2600,  Saint Louis, Missouri 63108
Phone: 314-454-6120

Cincinnati Children's

Address: 3333 Burnet Avenue, Cincinnati, OH 45229
Phone: 513-636-4222

The Children's Hospital of Philadelphia

Address: 34th and Civic Center Boulevard, Philadelphia, PA 19104
Phone: 215-590-1719

Greenwood Genetic Center

Address: 106 Gregor Mendel Circle, Greenwood, SC 29646
Phone: 1-888-442-4363

Vanderbilt Kennedy Center

Address: One Magnolia Circle, Nashville, TN 37203
Phone: 615-875-9311

Texas Children's Hospital

Address: 6701 Fannin St., Suite 1250, Houston, TX 77030
Phone: 1-888-430-7388(RETT) or 832-822-7388