Join the International Fragile X Premutation Registry: Enrol online

May 3rd, 2021

Building knowledge on the Fragile X Premutation

The online International Fragile X Premutation Registry has been created to encourage research on the Fragile X premutation and ultimately lead to better care, and possible treatments, for females and males whose health is impacted by the premutation.  The goal is to build knowledge about the Fragile X premutation.

A Registry is a contact list stored in a secure online database.

The IFXPM Registry was created by clinicians, researchers, family representatives and groups from around the world who partnered with the National Fragile X Foundation (US) and the UC Davis MIND Institute in California.

The Registry team is led by Dr David Hessl of the UC Davis Mind Institute, and National Fragile X Foundation (US)  representatives Robert Miller and Hilary Rosselot  Fragile X Association of Australia is pleased to be a foundation partner in this important initiative, with our Board member Karen Lipworth part of the Registry team.

Who is invited to join the Registry?  Female and male Fragile X premutation carriers from all around the world, and who are 18 years or over, are invited to join the Registry by enrolling online.

What’s involved? People who join the registry complete a survey to provide their contact, demographic, and basic medical details related to the Fragile X premutation.   The data is stored in a secure online database.

As a participant, you will receive annual updates about research developments in this field, and you may also be contacted by the IFXPM Registry team about research studies you may be eligible to participate in, including future treatment studies. Researchers from all around the world, including Australia, will have the opportunity to submit details of their Fragile X premutation study to the IFXPR Advisory Committee for review.  Where a study is approved for distribution, the IFXPR team will email a  recruitment flyer to eligible participants.

How will the Registry help the Fragile X community?  A registry that includes a large and diverse group of individuals with the Fragile X premutation, as well as family members without the premutation, will greatly facilitate research, including future treatment and intervention studies. Note that research is not restricted to medications, and includes any interventions that could positively impact quality of life. Participants may leave the Registry at any time should they no longer wish to be contacted about Fragile X premutation research participation opportunities and developments.

More information about the Registry, including Frequently Asked Questions and bios of the Registry Team, is on the National Fragile X Foundation website 

How to join the Registry?   Enrolment in the Registry is done online, and it should take around 30 minutes to answer the enrolment survey questions.

JOIN THE REGISTRY HERE

Video recording of Q&A session held on 27th May, featuring speakers Dr Jonathan Cohen and Karen Lipworth
On our Youtube channel:  https://www.youtube.com/watch?v=g5XHT0GANhw

Questions about the Registry: contact one of the IFXPM Registry team members or contact us at Fragile X Association of Australia
Call 1300 394 636 or email support@fragilex.org.au

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