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FSHD Clinical Trial Research Network

FSHD > Resources for Researchers

Why Join as a Researcher?

research lab photo

Researchers in the FSHD CTRN have access to:

  • experienced clinical investigators, research coordinators and study evaluators
  • centralized coordination and regulatory oversite
  • centralized data management and data quality control
  • centralized training of study staff
  • patient engagement plans for studies: patient focus groups and patient advisory councils to help with recruitment, retention, and results dissemination
  • key stakeholder involvement through an advisory council comprised of clinical trialists, patient advocates, patients, and industry
  • academic center affiliated CTSA resources to conduct outreach to underserved populations
  • guidance for clinical trial budgets and contracts

FSHD CTRN Resources


Protocol development
Data dictionary
Case report forms


Clinical Evaluator training
Clinical Research Coordinator training
Guidance on site selection


Advisory councils
Feedback meetings
Focus groups
Researcher newsletter

Contact Us

Case Report Forms (CRF)


Last modified: May 04, 2020
Clinical Trials
Contact Us

Kiley Higgs
Project Manager