Background

Reliable and accurate outcome measures are critical for monitoring disease progression in natural history studies and evaluating therapeutic efficacy in clinical trials, yet inconsistent training and limited access to standardized tools have been barriers to implementation across sites assessing patients with CMT and related neuropathies.

To address this gap and strengthen global clinical trial capacity, the Charcot-Marie-Tooth and Related Neuropathies Consortium (CMTR) in partnership with the Peripheral Nerve Society, is pleased to announce a pilot initiative to expand the global network of trained and certified clinical evaluators in CMT outcome measures.

Goal

To scale-up multinational clinical trial capacity, the goal of this pilot initiative is to expand the global network of well-trained clinical evaluators to promote accurate and reliable data collection of CMT outcome measures (children: CMTPedS, CMTInfS; adults: CMT-FOM, CMTNS).

Resourcing

This pilot initiative is supported by a generous donation from Dr. Michael Shy to the CMTR, Peripheral Nerve Society to support education and training in CMT outcome measures for new sites globally who can advance natural history and trial endpoint knowledge, with an emphasis on clinical sites in South America, Africa and Asia.

This pilot initiative will use the ClinicalOutcomeMeasures.org web-based learning platform for training and quality assurance activities. The online platform was created through a consultation and co-design process involving clinicians, researchers, industry stakeholders, and patient partners, with additional input from experienced Master Trainers (Cornett et al., J Peripher Nerv Syst 2025).

Training Activities

This pilot initiative involves certifying new clinical evaluators (healthcare professionals with experience assessing physical function in neuromuscular disorders) via online learning and a hosted Training & Certification Workshop. Clinical evaluators will access and complete beginner and advanced training modules using the ClinicalOutcomeMeasures.org web-based learning platform followed by a hosted in-person Master Trainer-led CMT Outcome Measures Training & Certification Workshop in the use of CMT Outcome Measures (children: CMTPedS, CMTInfS; adults: CMT-FOM, CMTNS).

Benefits for Certified Clinical Evaluators in CMT Outcome Measures

• Join a growing global network of accurate and reliable trial-ready Clinical Evaluators listed on ClinicalOutcomeMeasures.org
• Access to ongoing training, quality assurance, and advanced knowledge resources
• Access to Q&A sessions with Master Trainers
• Membership of a global community of like-minded Clinical Evaluators

Expression of Interest (EOI)

If you would like to submit an EOI to host a funded Training & Certification Workshop in CMT Outcome Measures, please click here to complete the EOI by June 30, 2026.  Please note that active PNS membership is required in order for a center to be eligible for funding upon acceptance of their submitted EOI.

For Further Information
Contact Joshua Burns, CMTR Chair, at Joshua.Burns@STJUDE.ORG