International Fragile X Premutation Registry Recruitment Support

International Fragile X Premutation Registry (IFXPR) Recruitment Support

Program Type: Recruitment assistance and research resource access for investigators

Focus Areas:

• Fragile X premutation research
• Fragile X-Associated Tremor/Ataxia Syndrome (FXTAS)
• Fragile X-associated primary ovarian insufficiency (FXPOI)
• Clinical trial readiness
• Neurodegenerative disease research
• Reproductive health research

Geographic Scope: International (registrants from 32 countries as of 2022)

The IFXPR provides researchers and investigators with access to a diverse registry of individuals with the FMR1 premutation and family members for recruitment purposes. The registry facilitates research to understand the premutation's impact on human health and supports clinical trial readiness. As of 2022, the registry included 747+ registrants from 32 countries.

Eligibility:

• Academic researchers and clinical investigators
• Projects focused on Fragile X premutation conditions
• Clinical trial developers

Background: Published in Journal of Medical Genetics (2022). The registry was developed to facilitate research understanding of the premutation and its health impacts, clinical trial readiness, and community building among carriers, family members, researchers, and clinicians worldwide.

Application Process for Recruitment Support

Step 1: Submit Recruitment Request

Required Materials:

Note: Specific detailed application procedures, forms, and submission requirements should be confirmed directly with NFXF at fragilex.org or through their For Researchers section.