Enhancing the Role of Clinical Research Coordinators in Frontotemporal Degeneration Studies
By
Shana G. Dodge
Danelle J. Carter
Dahlia Kamel
Angela Lunde
Quinn Hlava
Kevin Nelson
Penny A. Dacks
September 11, 2026
Clinical Scorecard: Enhancing the Role of Clinical Research Coordinators in Frontotemporal Degeneration Studies
At a Glance
Category Detail
Condition Frontotemporal Degeneration (FTD) Key Mechanisms Neurodegenerative disorders affecting frontal and temporal lobes, leading to behavioral and cognitive changes. Target Population Individuals diagnosed with frontotemporal degeneration and their families. Care Setting Clinical research environments focused on neurodegenerative disorders.
Key Highlights
62% of CRCs felt insufficiently prepared for their roles. Key training deficiencies identified in genetics, symptom management, and brain donation. Retention linked to competitive compensation and career advancement opportunities. CRCs are critical for participant engagement and retention in FTD trials. High turnover rates among CRCs due to perceived temporary nature of the role. Guideline-Based Recommendations
Diagnosis
Subtypes of FTD diagnosed based on clinical symptoms. Management
No approved symptomatic or disease-modifying therapies currently available for FTD. Monitoring & Follow-up
Regular engagement with participants and families is essential for study continuity. Risks
High turnover of CRCs can lead to protocol inconsistencies and participant confidence issues. Patient & Prescribing Data
Patients with frontotemporal degeneration and their caregivers.
Research continues in both interventional and observational contexts despite lack of approved therapies.
Clinical Best Practices
Implement structured disease-focused orientation for CRCs. Invest in disease-specific training to enhance CRC competency. Foster strong relationships between CRCs and Principal Investigators to improve retention. Related Resources & Content
