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.

Learn more

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.

How to Register

1. Email us to request your registration link

Please contact us if you are interested in joining the FragileX Connect Registry.

2. Receive your individual-specific registration link

We will send you a personal link by email.

3. Complete your registration

Use the link provided to review the information and register.

REGISTER TO BE A PART OF

FRAGILEX CONNECT

A Canadian Research Registry

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Why do I need to request a link by email?

To ensure the registry remains a safe, trusted, and ethical space for participation, we are using individual-specific registration links rather than a public link. This approach helps protect participant information, reduce the risk of bot or invalid entries, and preserve the integrity and quality of the data collected.