Fragile X Clinical & Research Consortium

In 2006, the National Fragile X Foundation organized the majority of the U.S. medical institutions and clinicians that had an emphasis on Fragile X treatment into a “Fragile X Clinical & Research Consortium (FXCRC)”. We provide its administrative structure, such as meeting planning, material development, publicity and internal communication. We are also working hard to help establish additional clinics throughout the U.S. and to help existing clinics become more comprehensive in their delivery of services. Our goal is that all families will have access to quality evaluation, treatment recommendations and referrals within a reasonable geographic distance from their homes.

The Consortium has many other activities including the development of a knowledge base for treatment of difficult cases and collaborative research efforts that will help us better understand Fragile X and the needs of families.

What is the Fragile X Registry and Database?

Beginning in 2008 and continuing to the present, the U.S. Centers for Disease Control and Prevention has supported the FXCRC through grants designed to increase our understanding of fragile X syndrome.

One of the best ways for families to help advance our understanding and to improve treatment is to become part of the FXCRC Registry and Database. Individuals and families can join the FXCRC Registry without becoming part of the Database. But the two are designed to work together to increase our scientific and clinical understanding of fragile X syndrome. When visiting a Fragile X Clinic you will be provided with information about the Registry and Database and you will be given an opportunity to participate if you are interested.

The Registry

The Registry is for individuals that have been diagnosed with a Fragile X-associated Disorder and their family members. Registrants provide basic information about themselves and the ways they may want to become involved in research. They sign a consent form and fill out the Registry form. (A parent or guardian approves participation and signs for dependents.) The goal of the Registry is to provide participants with opportunities to become involved in research projects or clinical trials that have been approved by an expert review team. The Registry also helps researchers to quickly and efficiently identify participants who may be interested and who might meet the criteria for specific research projects.

The Database

The purpose of the FXCRC Database is to collect basic information on the medical history, current health, and functional level of individuals from birth to 24 years of age living with FXS. The information is gathered by the clinician or researcher using structured forms developed for the Database project.

When this information is gathered from many participants in Fragile X clinics across the country, it will become a valuable tool to help researchers better understand FXS across the lifespan. This includes learning about physical and emotional health, education, and how medications and other therapies may improve the health outcomes for individuals with FXS. The information could benefit millions of individuals with FXS throughout the world.

A Note About Privacy

All participants in the FXCRC Registry and Database will have their personal information stored securely at the clinic at which they were seen.

No personal identifying information is entered into the shared Registry and/or Database. This will help ensure that everyone’s individual information is kept private.

How do I Join?

You can learn more about joining the Registry or Database by contacting your nearest Fragile X Clinic.