Clinical Summit 2023 – Impact Report

Charcot-Marie-Tooth disease (CMT) is the most commonly inherited peripheral neuropathy. CMT degrades the peripheral nerves that control muscles. It causes loss of function and sensation in the hands, arms, feet, and legs. Once the nerves degrade, they disconnect from the muscles resulting in muscle wastage. Symptoms can appear in the first decade of life and progress with age, resulting in increasing levels of disability. CMT affects around 1 in every 2500 people, there are over 100 known causative gene mutations and there is currently no curative treatment available to the estimated 3 million people worldwide who live with CMT.

One of the most frequently heard complaints from the CMT community is their doctor doesn’t know much about CMT and therefore offers little help in how to manage the disease and reduce the impact on their lives. To address this knowledge gap, the Charcot-Marie-Tooth Association (CMTA) hosted the inaugural CMT Clinical Summit on Friday April 21, 2023, with the goal of improving care for all people living with Charcot-Marie-Tooth disease. Eight in-depth accredited sessions were offered for healthcare professionals covering the areas of: Neurology, Physical Therapy, Occupational Therapy, Genetic Counseling, CMT Surgical Options/When to Refer, Clinical Trial Readiness/Clinical Studies, CMT Breathing-related Issues, Help for Kids in School (504s and IEPs).

Of the 113 healthcare professionals registered, 79% were new to the CMTA organization.

A range of professionals from the US, UK, France, Italy, and Japan who attended:

  • Neurologist
  • Physical Therapist (PT)
  • Physician Assistant (PA)
  • Occupation Therapist (OT)
  • Nurse
  • Genetic Counselor
  • Medical Student
  • BioPharma Employee
  • CMT Scientist/Researcher
  • PAG Leaders
  • Foot and Ankle Orthopedic Surgeon
  • Physiatry
  • Physical Medicine & Rehab
  • Parent
“The CMTA’s inaugural CMT Clinical Summit provides an unrivaled opportunity to connect with CMT experts and colleagues from around the world. The CMTA’s Strategy to Accelerate Research (STAR) and global consortium of researchers, clinicians and alliance partners is driving rapid advances in CMT research. This Clinical Summit provides an essential opportunity for all those working with CMT patients to refresh and update their knowledge and practice.”
Dr Katherine Forsey
Chief Research Officer, CMTA

One of a kind learning opportunity

The CMT Clinical Summit program was designed to deliver high-quality content in a short space of time, it included a welcome keynote presentation followed by four sessions, each of which had two choices running in parallel split to provide two professional tracks that could be mixed and matched depending on interest.

Katherine Forsey, PhD

CMT Research Highlights

John Svaren, PHD
Katherine Forsey, PHD VIEW RECORDING →

CMT Neurology for Clinicians

Steven Scherer, MD VIEW RECORDING →

Physical Therapy for CMT

Kate Eichinger, PHD, D.P.T VIEW RECORDING →

Clinical Trials/Studies for CMT

David Herrmann, MD VIEW RECORDING →

Occupational Therapy for CMT

Kim Anderson, MS, OTR/L VIEW RECORDING →

Genetic Testing and Counseling

Shawna Feely, MS, LGC VIEW RECORDING →

CMT-Related Breathing Impairment

Ashraf Elsayegh, MD VIEW RECORDING →

Surgical Intervention:
When is it time to refer?

Glenn Pfeffer, MD VIEW RECORDING →

Social Workers:
Navigating Schools (504/IEPS)

Sarah Kesty VIEW RECORDING →

All sessions were recorded, allowing participants to access and gain CME credits for the parallel sessions they were not able to attend live. The enduring CMT Clinical Summit materials will continue to be available to registrants until May 24, 2024.

New registrants can access the CMT Clinical Summit recorded sessions and CME accreditation at any time until April 2024. Access via Clinical Summit Enduring Materials for those requiring CME accreditation or for those who do not wish to earn CMEs you may access all the session recordings via the links above or Clinical Summit Session Recordings.

As a result of the CMT Clinical Summit, the CMTA is now in contact with the leaders of four new clinical centers which could potentially become CMTA Centers of Excellence.

“With the goal of expanding our commitment to improving care for all people living with Charcot-Marie-Tooth disease, the CMTA is hosting the first of its kind CMT Clinical Summit. CMT experts will be providing disease education in the areas of neurology, genetics, clinical trials/studies, surgical intervention, PT/OT, breathing-related issues, and social work. It has been a desire of the CMT patient community for years that their general health care professionals learn more about CMT. We are elated to make this type of education a reality.”
Laurel Richardson
Director of Community Outreach, CMTA

The cost of registration was $150 for those requiring continuing medical education (CME) accreditation and free for those not requiring CME accreditation. The CMT Clinical Summit was provided by the Charcot-Marie-Tooth Association, a 501©(3) nonprofit organization.