CMTA Centers of Excellence

Mike Shy at Iowa

Dr. Michael Shy, co-chairman of the the CMTA’s Clinical Expert Board, with a patient at the CMTA COE at the University of Iowa

Clinical Expertise, Comprehensive Evaluation and Care, Information Crucial for Clinical Trials

One of the CMTA’s primary missions is improving the quality of life for those with CMT and one way we accomplish this mission is by sponsoring patient-centric, multi-disciplinary CMT clinics, staffed by some of the highest quality CMT clinicians and researchers in the world. Through these CMTA Centers of Excellence, children, adults and families affected by CMT can be assured of receiving comprehensive care by a team of CMT experts.

The CMTA Centers of Excellence will become even more important as the CMTA begins clinical trials for candidate therapies. The success of these trials will largely depend on how much we know about the “natural history” of CMT—how different types of CMT progress over time and whether novel medications are slowing the course of the disease, and much of that information will be supplied by the Centers of Excellence.

The Centers roughly correspond to the 17 international sites that make up the NIH Inherited Neuropathies Consortium (INC)—a group of academic medical centers, patient support organizations, and clinical research resources sponsored in part by the CMTA.

U.S. CMTA Centers of Excellence

COE Map - US

California

Cedars-Sinai Charcot-Marie-Tooth/Hereditary Neuropathy Center*
127 S San Vicente Blvd Suite A6600
Los Angeles, CA 90048

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Clinical Directors: Robert H. Baloh, MD, and Richard A. Lewis, MD, PhD

Appointments: 310-423-4268

Adult & Pediatric Services Provided:
Neurology
Orthopedic Surgery
Physiatry
Physical Therapy
Genetic Counseling
Social Work/Counseling
Orthotics/Prosthetics

Stanford Children’s Health*
730 Welch Road, 2nd Floor
Palo Alto, CA 94304

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Clinical Director: John Day, MD, PhD

Appointments: 650-723-0993

Pediatric Services Provided:
Neurology
Orthopedic Surgery
Occupational Therapy
Genetic Counseling
Speech/Language Pathology

Stanford Neuromuscular Program*
Stanford Neuroscience Health Center
213 Quarry Road
Palo Alto, CA 94304

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Clinical Director: John Day, MD, PhD

Appointments: 650-723-6469

Adult Services Provided:
Neurology
Physical Therapy
Occupational Therapy
Genetic Counseling
Social Work/Counseling
Speech/Language Pathology

Connecticut

Connecticut Children’s Medical Center, Farmington*
505 Farmington Ave
Farmington, CT 06032

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Clinical Director: Gyula Acsadi MD, PhD

Appointments: Nanci Stolgitis, RN 860-837-7500

Email: Nstolgitis@connecticutchildrens.org

Pediatric Services Provided:
Pediatric Neurology
Physiatry
Orthopedic Surgery
Physical Therapy
Orthotics/Prosthetics
Occupational Therapy
Nutrition

Florida

Nemours Children’s Hospital*
13545 Nemours Parkway
Orlando, FL 32827

Clinical Director: Richard S. Finkel, MD

Clinic Coordinator: Candace Eden

Appointments: 407-650-7250

Pediatric Services Provided:
Neurology
Orthopedic Surgery
Physiatry
Physical Therapy
Occupational Therapy
Genetic Counseling
Orthotics/Prosthetics
Pulmonology
Cardiology

University of Miami*
Professional Arts Center
1150 NW 14th St, Ste 609
Miami, FL, 33136

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Clinical Director: Mario Saporta, MD

Appointments: 305-243-7400

Email: mjaime@med.miami.edu

Adult Services Provided:
Neurology
Physical Therapy
Orthotics/Prosthetics
Genetic Counseling
Social Work/Counseling

Iowa

University of Iowa Hospitals & Clinics*
Boyd Tower, 2nd Floor
200 Hawkins Drive
Iowa City, IA 52242

Visit Clinic Website

Download Clinic Brochure: Iowa_CMT_Clinic_Brochure.pdf

Clinical Directors: Michael E. Shy, MD, Laurie Gutmann, MD, and Nivedita Jerath, MD

Appointments: 319-384-6362

Email: uicmtclinic@uiowa.edu

Adult & Pediatric Services Provided:
Neurology
Orthopedic Surgery
Physical Therapy
Pediatrics
Occupational Therapy
Genetic Counseling

Maryland

The Johns Hopkins CMT Center*
Department of Neurology
Rangos Bldg, Room 248
855 North Wolfe Street
Baltimore, MD 21205

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Clinical Director: Thomas Lloyd, MD

Appointments: (Adult) Denise Tawney 410-955-2227
(Pediatric) Brynne Willis 410-955-4259

Adult & Pediatric Services Provided:
Neurology
Physical Therapy
Occupational Therapy
Genetic Counseling
Orthotics/Prosthetics
Durable Medical Equipment

Massachusetts

Massachusetts General Hospital*
Neuromuscular Diagnostic Center
165 Cambridge Street, Suite 820
Boston, MA 02114

Clinical Directors: William David, MD, PhD, Florian Eichler, MD, and Vera Fridman, MD

Appointments: 617-724-7413

Email: tscott2@partners.org

Adult & Pediatric Services Provided:
Neurology
Physical Therapy
Genetic Counseling
Social Work/Counseling
Orthotics/Prosthetics

Michigan

University of Michigan*
2205 Commonwealth Blvd
Ann Arbor, MI 48105

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Clinical Director: Sindhu Ramchandren, MD

Appointments: 734-763-2554

Adult & Pediatric Services Provided:
Neurology
Orthopedic Surgery
Physiatry
Physical Therapy
Occupational Therapy
Genetic Counseling
Orthotics/Prosthetics

Minnesota

University of Minnesota Health Neurology Clinic at Fairview Maple Grove Medical Center*
14500 99th Ave N
Maple Grove, MN 55369

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Clinical Director: David Walk, MD

Appointments: 763-898-1000

Email: mdiaz3@fairview.org

Adult Services Provided:
Neurology
Physiatry*
Orthopedic Surgery
Physical Therapy
Occupational Therapy
Orthotics/Prosthetics
Genetic Counseling
Social Work/Counseling*
Podiatry*
Nutrition*
EMG/Nerve Conduction Studies

*Available by referral

New York

University of Rochester Peripheral Neuropathy/CMT Clinic*
University of Rochester Medical Center
Department of Neurology
601 Elmwood Ave (Box 673)
Rochester, NY 14642

Clinical Director: David Herrmann, MD

Appointments: Erin Collins 585-275-2559

Email: erin_collins@urmc.rochester.edu

Adult & Pediatric Services Provided:
Neurology
Orthopedic Surgery
Physiatry*
Physical Therapy
Occupational Therapy*
Genetic Counseling†
Social Work/Counseling*
Orthotics/Prosthetics‡

*Available by referral
†By request prior to visit
‡Not at clinic; separate appointment required

Pennsylvania

The CMTA Center of Excellence at the Perelman School of Medicine*
Hospital of the University of Pennsylvania
2 Radvin
3400 Spruce Street
Philadelphia, PA 19014

Visitor Information

Visit Clinic Website

Clinical Director: Steven Scherer, MD, PhD

Office: 215-349-5313

Scheduling: 215-662-3606

Email: jessica.richardson@uphs.upenn.edu

Adult Services Provided:
Neurology
Physical Therapy
Occupational Therapy
Genetic Counseling

The CMTA Center of Excellence and Neuromuscular Program at the Children’s Hospital of Philadelphia*
Wood Building, 6th Floor
3401 Civic Center Blvd
Philadelphia, PA 19104
Directions and Parking

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Clinical Director: Sabrina Yum, MD

Appointments: 215-590-1719

Email: Neuromuscular@email.chop.edu

Pediatric Services Provided:
Neurology
Orthopedic Surgery
Physiatry*
Physical Therapy
Occupational Therapy
Genetic Counseling
Nutrition

*Available by referral

Tennessee

The Vanderbilt Clinic*
1301 Medical Center Drive
Nashville, TN 37212
(South Garage Parking)

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Clinical Director: Jun Li, MD, PhD

Appointments: 615-322-7246

For young chldren, please see Dr.Bryan Burnette (615-936-0060) for an appointment before scheduling with Dr. Li.

Adult & Pediatric Services Provided:
Neurology
Orthopedic Surgery*
Physiatry*
Physical Therapy
Occupational Therapy*
Genetic Counseling*
Social Work/Counseling*
Orthotics/Prosthetics*

*Available upon request

Texas

CMT Clinic at Children’s Health Specialty Center
2350 N Stemmons Fwy
Dallas, TX 75207

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Clinical Directors: Diana Castro, MD, and Susan Iannaccone, MD

Appointments: 214-456-2768

Pediatric Services Provided:
Neurology
Orthopedic Surgery
Physical Therapy
Occupational Therapy
Genetic Counseling
Social Work/Counseling
Nutrition

Utah

University of Utah*
175 N Medical Dr East
Salt Lake City, UT, 84132

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Clinical Director: Nicholas Johnson, MD

Appointments: 801-585-7575

Adult & Pediatric Services Provided:
Neurology
Physiatry
Genetic Counseling
Orthotics/Prosthetics
Nutrition

Washington

Neurology Clinic at University of Washington Medical Center*
1959 NE Pacific Street, 8th Floor
Seattle, WA 98195

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Clinical Neurologists: Michael Weiss, MD, and Leo Wang, MD

Appointments: 206-598-5903

Email: kskin@uw.edu

Adult Services Provided:
Neurology
Physiatry
Neurogenetics

International CMTA Centers of Excellence

International COE Map

Australia

Peripheral Neuropathy Management Clinic*
The Children’s Hospital at Westmead
Cnr Hawkesbury Road and Hainsworth Street
Westmead NSW 2145
Australia

Clinical Director: Manoj Menezes, MD

Research Director: Joshua Burns, PhD

Appointments: (02) 98451325

Email: daralyn.hodgson@health.nsw.gov.au

Pediatric Services Provided:
Neurology
Orthopedic Surgery
Physiatry
Podiatry
Physical Therapy

(Referral to the following in-hospital services can be arranged where necessary: Orthotist, Genetic Counselor, Psychiatrist, Psychologist, Social Worker, Nutritionist/Dietician)

Belgium

Neuromuscular Reference Centre
Department of Neurology, Antwerp University Hospital
Wilrijkstraat 10
B-2650 Edegem, Belgium

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Clinical Director: Prof. Dr. Peter De Jonghe

Appointments: +32 3 821 34 23

Email: Neuromusculaire@uza.be

Adult & Pediatric Services Provided:
Clinical Neurology and Neurophysiology
Muscle Histopathology
Molecular Genetic Diagnosis

*The clinic has a multidisciplinary team consisting of all relevant medical and para-medical disciplines.

England

University College London Hospitals*
MRC Centre for Neuromuscular Diseases
8-11 Queen Square
London, England WC1N 3BG

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Clinical Directors: Mary M. Reilly, MD, and Francesco Muntoni, MD

Appointments: (0044)2034488019

Email: mariola.skorupinska@uclh.nhs.uk


Adult Services Provided:

Neurology
Orthopedic Surgery
Physical Therapy
Occupational Therapy*
Orthotics/Prosthetics*
Social Work/Counseling*

*Available upon referral

Italy

C. Besta Neurological Institute (Milan)*
Clinic of Peripheral and Central Degenerative Neuropathies Unit
Via Celoria, 11 -20133 Milan, Italy

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Clinical Director: Dr. Davide Pareyson

Appointments: +39-02-70631911

Email: sara.nuzzo@istituto-besta.it


Adult & Pediatric Services Provided:

Neurology
Physical Therapy

(Referral to the following services can be arranged where necessary: Physiatrist, Orthopedic Surgeon, Orthotist, Genetic Counselor, Psychiatrist, Psychologist)

* Denotes the CMTA Centers of Excellence that are included in the National Institutes of Health Inherited Neuropathies Consortium (INC). The INC is co-sponsored by the CMTA and the MDA. Worldwide more than 7,000 patients with CMT have been enrolled in protocols during the past three years, and their data, de-identified to protect patient privacy, is housed in a common repository. As a result of this collaboration, a new CMT evaluation scale for children has been established, along with a new evaluation system for adults, and an infrastructure has been developed to perform natural history studies and clinical trials for CMT.