The Canadian Fragile X Community Collaborates on

Vital New Priority Setting Partnership for Research and Care

Connecting
Fragile X:

A National Priority Setting Partnership to
‍ ‍Elevate What Matters in Research, Care & Community

Fragile X Canada is proud to announce the launch of a James Lind Alliance (JLA) Priority Setting Partnership (PSP) to establish Canada’s first national research and care priorities for Fragile X Syndrome and related FMR1-associated conditions.

This initiative will bring together individuals with lived experience, families, clinicians, researchers, and community organizations from across the country to identify and rank the most important questions that research should address. The process will be co-led by Fragile X Canada and Dr. Evdokia Anagnostou at Holland Bloorview Kids Rehabilitation Hospital, with support from national and international partners. By ensuring that the voices of families and individuals most affected are at the centre, this PSP will guide future funding, collaboration, and innovation to improve care, supports, and quality of life.

The JLA is a non-profit initiative that ensures health research focuses on what matters most to patients, families, and clinicians. A PSP brings these groups together to identify and prioritize unanswered questions in a particular health area. While many PSPs focus on treatments, others also look at broader issues like care delivery, supports, and quality of life. The ultimate goal is to give funders and researchers a clear, community-driven roadmap for the questions that will have the biggest impact. The process is overseen by the National Institute for Health Research (NIHR) in the UK, which ensures it is fair, transparent, and inclusive.

What’s Involved in the JLA PSP Process?
The JLA PSP is a proven way to uncover the Top 10 research priorities for Fragile X. These priorities don’t always take the form of detailed research questions. Instead, they point to the areas of greatest importance to families, self-advocates, and clinicians, the places where research could make the most difference.

By highlighting what matters most, the process creates a trusted roadmap for researchers and funders. It ensures future studies focus on the issues that directly impact the lives of those affected by Fragile X and their communities.

LATEST NEWS

Connecting Fragile X PSP protocol is approved by Steering Group and is under review by Ethics at Holland Bloorview.

July 2026

Connecting Fragile X Steering Group members from across Canada gather online to begin building a protocol.

March 2026

Fragile X Canada establishes a Steering Group to guide the PSP.

February 2026

Fragile X Canada Receives CIHR Institute of Genetics Planning and Dissemination Grant.

October 2025

Fragile X Canada to Launch Priority Setting Partnership at the 2025 National Conference.

October 2025

The Connecting Fragile X logo uses a woven, brushstroke X to represent the many voices, experiences, and areas of expertise coming together through the Fragile X Priority Setting Partnership.

The overlapping lines show that this work is not shaped by one perspective alone. It brings together
individuals and families, caregivers, clinicians, researchers, educators, and community partners
to explore the unanswered questions that matter across Fragile X care, research, and community support.

MEET YOUR STEERING GROUP

Our Steering Group brings together individuals and family members with lived experience, researchers, healthcare and allied health professionals, and community partners from across the Fragile X community. Together, they guide the Priority Setting Partnership and help ensure the process remains inclusive, transparent, and focused on the questions that matter most in research, care, and community.

Guiding the Fragile X Priority Setting Partnership with lived, clinical, research, and community experiences.

MEET YOUR PROJECT TEAM

The project team coordinates the day-to-day work of the Priority Setting Partnership. They support the Steering Group, manage consultation activities, organize community input, and help ensure each stage of the process is carried out carefully, consistently, and transparently.