Fragile X Syndrome (FXS) | Child and Adolescent Psychiatry (original) (raw)

Fragile X Research and Treatment Center

The Fragile X Research and Treatment Center at Cincinnati Children’s is the largest research arm within our Division of Psychiatry. At the center, we see about 500 families from across the country each year. And we do innovative research that translates directly into better care for patients of all ages.

Call 513-803-1150 or email* fragilex@cchmc.org to learn more.

What is Fragile X syndrome?

Fragile X syndrome (FXS) is a rare disease that affects about 1 in 4,000–6,000 people in the world. It’s the most common inherited cause of mental disability and autism. About two-thirds of people with FXS have a form of autism spectrum disorder (ASD).

Because FXS affects the FMR1 gene of the X chromosome, more males have FXS than females. You must get a DNA (blood) test to confirm a FXS diagnosis.

Our approach to Fragile X Syndrome

Since there’s currently no cure for FXS, at Cincinnati Children’s, we focus treatment on improving the patient’s and family’s quality of life. Families receive support with managing symptoms and work with a team of experts. All patients experience FXS in different ways. So, treatment is personalized to your needs.

Families can expect:

• Behavior and cognitive assessments
• Behavior interventions
• Education about FXS and how to care for someone with FXS
• Medication management for behavior symptoms
• Referrals to other services at Cincinnati Children’s, such as Speech-Language Pathology, Occupational Therapy, Special Education and Genetic Counseling.

Fragile X Syndrome Research

At the Fragile X Syndrome Research and Treatment Center, we research to improve diagnosis and treatment for FXS and related conditions. We bring together experts from various fields and institutions. Together, we turn scientific discoveries into real-world solutions.

Our researchers focus on both drug and non-drug studies. For our non-drug studies, we often look at brain function and activity.

It’s important that research visits are as easy as possible on families and patients. That’s why we offer supports, such as visual stories, practice caps to wear during electroencephalograms (EEGs), and certificates and prizes for completing visits.

*Please remember that information sent via email is not secure or confidential.