Why Join as a Researcher?
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
Standards
Protocol development
Data dictionary
Case report forms
Education
Clinical Evaluator training
Clinical Research Coordinator training
Guidance on site selection
Community
Advisory councils
Feedback meetings
Focus groups
Researcher newsletter
Case Report Forms (CRF)
- Classic Timed Up and Go (TUG)
- Concomitant Medication Log
- Demographics
- FSHD Clinical Score - Italian Scale
- FSHD Manual Muscle Testing
- Manual Muscle Testing
- Physical and Functional Examination
- PROMIS ® (Patient-Reported Outcomes Measurement Information System )
- Self-Reported History
- Severe Adverse Event
- Six-Minute Walk Test
Clinical Trials
View all Facioscapulohumeral Muscular Dystrophy related clinical trials in the state of Kansas.