Canadian Fragile X Community Collaborates on

Vital New Priority Setting Partnership for Research

James Lind Alliance
Priority Setting Partnership

For Fragile X Syndrome & Related Disorders

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 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.

What is a JLA Priority Setting Partnership (PSP)?
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.