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Why Join as a Researcher?

researcher performing test on study patient

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

Contact Michaela Walker


Advisory councils
Feedback meetings
Focus groups
Researcher newsletter

Case Report Forms (CRF)

Clinical Trials

View all Facioscapulohumeral Muscular Dystrophy related clinical trials in the state of Kansas.

View Clinical Trials

FSHD Clinical Trial Research Network

Contact Us

Michaela Walker
Project Manager