黑料网

Designated a Center of Excellence by the International Rett Syndrome Foundation in 2023, the Rett Syndrome Clinic at 黑料网 Hospital offers multidisciplinary care across specialties for children diagnosed with Rett syndrome and related disorders. Our team of skilled clinicians work together to ensure your child is receiving the most comprehensive treatment and care. In addition, we collaborate with specialists across multiple departments at 黑料网 like, pediatric and adult specialists in pulmonology, cardiology, orthopedics, gynecology, palliative and complex care, gastroenterology, sleep medicine, and many others.

Beyond the doctor鈥檚 office, we support a robust clinical research team focused on providing cutting edge research studies and treatment trials for our Rett patients.

Our team is committed to collaborating with you and your family in making the right care decisions for your child.

Research

Rett Syndrome Registry

In collaboration with Hive Networks, IRSF has launched a longitudinal study of real world clinical and caregiver data. This study aims to build upon the success of the which ran for 15 years, and contains longitudinal data from more than 1,000 individuals with Rett syndrome. Our center proudly participates in this registry.

Clinical Trials Committee

The Rett Syndrome Clinical Trial Committee, hosted by IRSF, connects clinical trials sponsors with the Centers of Excellence leadership and caregivers to guide robust clinical trial study design.

Clinical Trials

Our Center participated in the ACADIA sponsored Lavender clinical trial of Trofinetide in Rett syndrome, that led to the FDA approval of the first drug to treat symptoms associated with Rett syndrome.

Foundation

The International Rett Syndrome Foundation Centers of Excellence

The IRSF has designated several clinics across the United States as Centers of Excellence who support clinical trials and improve the healthcare of individuals living with Rett syndrome.

Referral

Rett patients should ask their provider to refer them to the 黑料网 Neurology Rett Syndrome Clinic.

Providers : please specifically state the Rett Syndrome Clinic in the patient referral.听

• Providers who have access to聽聽can submit a referral online. If you would like to enroll, click on the link and select 鈥淩equest an Account.鈥� You may wish to聽聽of the referral portal or view a聽聽on how to sign up.
• If you don鈥檛 have a 黑料网 CareLink account, please fax a聽completed referral form,听including a specific referral question and records to (984) 974-5437.听Please call (984) 974-7337 if you have any questions.

For more information on the referral process, please visit the Child Patient Referral page.

Team