THE NATIONAL FRAGILE X FOUNDATION logo

International Fragile X Premutation Registry Recruitment Support

THE NATIONAL FRAGILE X FOUNDATION

Funding Amount

Varies

Deadline

Rolling / Open

Grant Type

foundation

Overview

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)

    Description: 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.

    Funder: National Fragile X Foundation

    Contact: NFXF For Researchers section at fragilex.org

    How to Apply

    Application Process for Recruitment Support

    Step 1: Submit Recruitment Request

  • Access application through: International Fragile X Premutation Registry Recruitment Request on fragilex.org
  • Required Materials:

  • Research proposal or study protocol

  • Description of recruitment needs and target population criteria

  • Investigator qualifications/CV

  • Institutional affiliation and IRB approval status

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

    Focus Areas & Funding Uses

    Fields of Work

    science-research

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