FRAGILEX
CONNECT
A Canadian research registry
Every number represents a person, a family, and a story. FragileX Connect is Canada’s national registry designed to bring this valuable information together, to help us better understand who is impacted, where they are, and what supports they need. By sharing a few details, you are helping improve care, advance research, and shape policies that matter.
Approximately 136,000 Canadians are impacted by the Fragile X mutation.
Be Counted
Be Connected
Be Part of the Future
FragileX Connect brings together families, researchers, and clinicians to build a clearer picture of Fragile X in Canada.
With Dr. David Hampson and the University of Toronto, we’re collecting information that guides research, improves care, and strengthens supports across the country.
By sharing a few details about your family’s Fragile X story, like diagnosis, age, or background, you are helping improve care, research, and support for others.
Why a Registry?
For rare and neurodevelopmental conditions like Fragile X, progress depends on connection.
The registry helps us:
Understand the full spectrum of Fragile X–associated conditions across the lifespan
Identify priority areas for research and clinical care
Improve access to trials, studies, and innovations
Strengthen advocacy and policy efforts with Canadian data
Ensure research reflects what families and individuals say matters most
By participating, you help transform lived experience into impact.
Who Can Participate?
You may join the registry if you are:
An individual with Fragile X syndrome or FMR1-related condition
A parent, caregiver, or family member
A clinician or researcher interested in Fragile X–related research
Participation is voluntary, and you can choose what information to share.
REGISTER TO BE A PART OF
FRAGILEX CONNECT
A Canadian Research Registry
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