IRSF Center of Excellence Network

As an industry leader, IRSF designates 21 clinics in the U.S. as Centers of Excellence based upon their outstanding Rett-related medical care, research efforts, and thought leadership.

About the COE Network

IRSF is committed to ensuring that families have easy access to physicians with expertise in Rett syndrome. Clinics designated as an IRSF Center of Excellence (COE) are distinguished by providing best-in-class medical care and consultation, advancing clinical and translational research, and serving as thought leaders in topics related to Rett syndrome treatment.

Patients with Rett Treated

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U.S. Clinics in COE Network

States with COE Network Clinics

Enrolled in Rett Syndrome Registry

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Benefits for Physicians & Healthcare Providers

IRSF Centers of Excellence rank among the best in the world at providing care for individuals with Rett syndrome. Members of the network also take advantage of a wide range of benefits.

Improved Collaboration & Patient Care

COE member clinics participate in an ongoing dialog about caring for those with Rett as well as the latest research and clinical trials associated with the disease. This exchange of ideas enables clinicians to tackle the challenges of treating the disorder together.

Robust clinical collaboration results in better outcomes and satisfaction for patients and families who seek treatment at an IRSF Center of Excellence. Most recently, this collaboration led to the creation of our Comprehensive Care Guidelines.

Physician-to-Physician Mentoring

The insight of seasoned clinicians can be invaluable for physicians with less experience treating Rett. Since Rett syndrome is a rare disease, the advice of clinicians who have treated individuals with the disorder for years provides a major benefit for both doctor and patient.

Newer COE members can reach out to other COE physician experts in the field and take advantage of their insight to provide quality care faster.

Contribute to the Rett Syndrome Registry

IRSF provides limited financial support to clinics that achieve and maintain Center of Excellence (COE) designation to support research efforts, clinic coordination activities, and data collection.

All COEs are expected to enroll patients into the IRSF Rett Syndrome Registry, which extends the work of the longitudinal NIH-funded Natural History Study.

We are honored to receive COE designation from IRSF. Since our inception, our clinic has been committed to improving the quality of life for children with Rett syndrome and their families through comprehensive multidisciplinary care and clinical and translational research. We share in IRSF’s mission to improve care today while laying the foundation for better treatments in the future. We look forward to our continued partnership with IRSF and the other COEs as we work in unison on better care for Rett syndrome today and a cure tomorrow.

Cary Fu, MD

Director of the Rett Clinic at Vanderbilt University

Obtaining the Center of Excellence designation from IRSF provides the opportunity for a strong partnership and support of our team to continue to offer thorough multi-disciplinary care, to be involved in important clinical trials, to be part of the strong Rett syndrome consortium, and to help us continue our pursuit of optimizing the lives of individuals and their families who are affected by Rett syndrome.

Shannon Standridge, DO, MPH

Director of the Rett Syndrome Clinic at Cincinnati Children’s Hospital

The Center of Excellence designation is both an honor and a beacon—families of newly diagnosed people with Rett syndrome can find our center because of the CoE label and connection to the IRSF network.

Dallas Armstrong, MD

Director of the Rett & Related Disorders Clinic at Children’s Health Dallas

We are honored for Nationwide Children’s Hospital to be recognized as a Center of Excellence by the International Rett Syndrome Foundation. This will ensure the children we care for with Rett Syndrome are always receiving the most complete and well-researched care possible. Becoming a part of such a well-established group is another step toward continuing to improve the lives of these children.

Christopher Beatty, MD

Director of Nationwide Children's Hospital Rett Syndrome Clinic

Center of Excellence Requirements

All clinics in the network are dedicated to providing best-in-class clinical care. IRSF rigorously vets clinics prior to awarding the designation and requires regular reapplication and review in order for clinics to maintain their status. To achieve the COE designation, clinics must demonstrate compliance with criteria established by IRSF’s Medical Advisory Board:

Physician Director

Oversees all clinical services and has expertise in the diagnosis and treatment of Rett syndrome.

Research/Clinic Coordinator

Ensures care coordination for families and submits data into the IRSF Rett Syndrome Registry.

Clinic Services

Provides an array of services tailored to individuals with Rett syndrome.

Rett Syndrome Registry

Participates in the Registry and enrolls eligible and interested patients.

Annual Meetings

Physician Director attends annual in-person network meetings.

Research Involvement

Demonstrates involvement in Rett clinical research and clinical trials.

healthcare providers