Fatigue is one of the most common and debilitating symptoms reported by individuals living with CMT. Yet for years, it has remained difficult to measure, difficult to validate, and often underestimated in both clinic visits and clinical trials.
At the 2026 HNF CMT Summit + Retreat (April 16–18 | Ellicott City, MD), Monica Marzouk, MMedRes, and Kayla Cornett, PhD, will lead a powerful scientific session focused on transforming how fatigue is understood and measured in CMT.
Fatigue in CMT: From Lived Experience to Clinical Trial Endpoint
In this session, Monica and Kayla will present:
- A systematic review of existing fatigue measures
- Data from a prevalence study examining how fatigue impacts the CMT community
- Development and validation plans for HNF’s CMT-specific patient-reported outcome (PRO) fatigue scale (CMTFatiqueS).
HNF’s emerging CMTFatiqueS tool is designed to accurately capture:
- Frequency of fatigue
- Severity
- Real-world impact on daily functioning
Why does this matter?
Because what cannot be measured cannot be treated.
Generic fatigue scales often fail to reflect the lived experience of CMT. A disease-specific fatigue PRO has the potential to:
- Improve endpoint sensitivity in clinical trials
- Enhance interpretability of therapeutic benefit
- Elevate patient-centered outcomes in regulatory discussions
- Inform future trial design and routine clinical care
As CMT research accelerates, refining meaningful endpoints beyond motor function is critical. Fatigue is not secondary. It is central to quality of life.
Join us as we move from anecdote to actionable data and ensure that fatigue in CMT is no longer invisible.
2026 HNF CMT Summit + Clinical Trial Readiness Retreat
April 16–18, 2026
Turf Valley Resort, Ellicott City, Maryland
If you are a researcher, clinician, industry partner, or patient advocate invested in advancing CMT trials and outcomes, this is a session you will not want to miss.
Register soon at CMTsummit.org
Together, we are building smarter trials and stronger outcomes for the CMT community.
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