CMTA Centers of Excellence | Charcot-Marie-Tooth Association

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 20 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

CMTA U.S. Centers of Excellence

California

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

Visit Clinic Website

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

Appointments: Tami Kendra-Romito, 310-423-4268

Email: tami.kendra@cshs.org

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

Stanford Children’s Health*
730 Welch Rd, 2nd Fl
Palo Alto, CA 94304

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Clinical Directors: John Day, MD, PhD, and Ana Tesi Rocha, MD

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 Rd
Palo Alto, CA 94304

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Clinical Director: John Day, MD, PhD

Appointments: 650-723-6469

Email: jnfisher@stanford.edu

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 Pkwy
Orlando, FL 32827

Clinical Director: Richard S. Finkel, MD

Clinic Coordinator: Candace Eden

Appointments: 407-650-7715

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

University of Florida
Neurorestoration Center
3450 Hull Rd
Gainesville, FL 32607

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Clinical Director: James Wymer, MD

Appointments: 352-294-5000

Adult & Pediatric Services Provided:
Neurology
Occupational Therapy
Orthotics/Prosthetics
Pain Management
Podiatry
Social Work/Counseling

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

Clinical Director: Mario Saporta, MD

Appointments: 305-243-7400

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

Illinois

Northwestern Memorial Hospital
Department of Neurology
Peripheral Neuropathy/Division of Neuromuscular Disease
259 E Erie St
Chicago, IL 60611
Clinical Director: Daniela Maria Menichella, MD, PhD

Appointments: 312-695-7950

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

University of Illinois at Chicago
Department of Neurology
1801 W Taylor St Ste 4 E
Chicago, IL 60612

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Clinical Director: Charles K. Abrams, MD, PhD

Appointments:312-996-4780

Adult & Pediatric Services Provided:
Neurology
Nutrition
Occupational Therapy
Orthotics/Prosthetics
Orthopedic Surgery*
Physiatry*
Physical Therapy
Podiatry*
Speech/Language Pathology
Social Work/Counseling

*Available by referral

Iowa

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

Visit Clinic Website

Download Clinic Brochure: Iowa-COE-Clinic-Brochure_Feb2018.pdf

Clinical Director: Michael E. Shy, 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, Rm 248
855 N Wolfe St
Baltimore, MD 21205

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Clinical Director: Thomas Lloyd, MD

Appointments: (Adult) 410-955-2227
(Pediatric) 410-955-4259

Contact: Theresa Cox thutson2@jhmi.edu

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

Massachusetts

Massachusetts General Hospital*
Neuromuscular Diagnostic Center
Charles River Plaza
165 Cambridge St Ste 820
Boston, MA 02114

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Clinical Director: Reza Seyedsadjadi, MD

Appointments: Tamika Scott, 617-726-3642

Email: tscott2@partners.org

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

Michigan

Wayne State University School of Medicine and Detroit Medical Center*
4201 St. Antoine
UHC-8D
Detroit, MI 48201

Clinical Director: Jun Li, MD, PhD

Appointments: 313-745-4275

Adult Services Provided:
Neurology
Physical Therapy
Genetic Counseling
EMG/Nerve Conduction Studies

Minnesota

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

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

Missouri

University of Missouri*
Department of Neurology
1020 Hitt St
Columbia, MO 65212

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Clinical Director: Raghav Govindarajan, MD, FAAN

Appointments: 573-882-1515

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

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

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Clinical Director: David Herrmann, MD

Appointments: 585-275-2559

Email: CMT_Studies@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

North Carolina

University of North Carolina at Chapel Hill
Peripheral Neuropathy Center
194 Finley Golf Course Rd Ste 200
Chapel Hill, NC 27517

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Clinical Director: Rebecca Traub, MD

Appointments: 984-974-4401

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

*Available by referral

Ohio

Ohio State University*
Wexner Medical Center
CarePoint East
543 Taylor Ave
Columbus, OH 43203

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Clinical Director: Amro Stino, MD

Email: amro.stino@osumc.edu

Appointments: 614-293-4969

Adult & Pediatric Services Provided:
Genetic Counseling
Neurology
Occupational Therapy
Orthotics/Prosthetics
Physical Therapy
Podiatry

Oregon

Oregon Health & Science University
3303 SW Bond Ave
Portland, OR 97239

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Clinical Director: Chafic Karam, MD

Appointments: 503-494-0744

Adult & Pediatric Services Provided:
Neurology
Physiatry
Physical Therapy
Occupational Therapy
Social Work/Counseling

Pennsylvania

The CMTA Center of Excellence at the Perelman School of Medicine*
Hospital of the University of Pennsylvania
Perelman Center for Advanced Medicine, South Pavilion, 2nd Fl
3400 Civic Center Blvd
Philadelphia, PA 19104

Visitor Information

Visit Clinic Website

Clinical Director: Steven Scherer, MD, PhD

Office: 215-349-5313

Scheduling: Lois Dankwa, 215-662-3606

Email: lois.dankwa@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

Visit Clinic Website

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Clinical Director: Sabrina Yum, MD

Appointments: Hannah Borger, Clinic Coordinator, 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

University of Pittsburgh Medical Center (UPMC)
Lilian Kaufman Bldg
3471 Fifth Ave #810
Pittsburgh, PA 15213

Clinical Director: Sasha Zivkovic, MD

Appointments: 412-692-4917

Adult Services Provided:
Neurology
Physiatry

Children’s Hospital of Pittsburgh
4401 Penn Ave 2nd Fl
Pittsburgh, PA 15224

Clinical Director: Hodas Abdel-Hamid, MD

Appointments: 412-692-6106

Pediatric Services Provided:
Neurology
Physical Therapy
Genetic Counseling

Texas

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

Visit Clinic Website

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

Appointments: Lindsay Adkins, NM Nurse, 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

Visit Clinic Website

Clinical Director: Russell Butterfield, MD, PhD

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 St, 8th Fl
Seattle, WA 98195

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Clinical Director: Michael Weiss, MD

Appointments: Gail Schessler, Clinic Coordinator, 206-598-7688

Email: gailm9@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 Rd and Hainsworth St
Westmead NSW 2145
Australia

Visit Clinic Website

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

Appointments: Mariola Skorupinska, (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

Visit Clinic Website

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.