STXBP1 Foundation Expands STARR Natural History Study with New Site at Rush University Medical Center

Dr Elizabeth Berry-Kravitz runs a number of specialty clinics, including one for Fragile X - a rare genetic disease. She also sees many patients with neurogenetic and neurodevelopmental disabilities.

The STXBP1 Foundation announces it has awarded a $152,152 grant to Elizabeth Berry-Kravis, MD PhD of Rush University Medical Center. Dr. Berry-Kravis is Professor, Pediatrics and the Co-Director of the Molecular Diagnostics Section of the Genetic Laboratory. 

The purpose of the STARR Natural History Study is to understand how STXBP1-related disorder affects patients over time, and is an important program to ensure the community is ready for clinical trials. Rush is the sixth STARR site, joining Children’s Hospital of Philadelphia, Children’s Hospital Colorado, Stanford Medicine Children’s Health, Baylor / Texas Children’s Hospital and Weill Cornell Medicine. Already, over 150 participants have been seen in the study, which launched in July 2023. 

Rush provides a midwest site for STXBP1 families to participate in the STARR study, and also to access expert clinical care.

“We’re thrilled to welcome Rush University Medical Center to the STARR study,” said Mark Quinlan, Executive Director of the STXBP1 Foundation. “This site helps make this program more accessible for our community. By adding Rush, families across the Midwest will have an easier path to expert care and the opportunity to contribute to research that brings us closer to better treatments.”

Learn more about Dr Berry-Kravis’ work here.

Rush will see STARR patients in the future so check back frequently on our STARR Natural History Study page to see when the site launches.