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
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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, PhD, and Richard A. Lewis, MD
Appointments: Tara A, Jones, MS, CGC, 310-423-4268
Email:
Tara.Jones@cshs.org
Adult & Pediatric Services Provided:
Neurology
EMG/Nerve Conduction Studies
Orthopedic Surgery
Pulmonology
Physical Therapy
Genetic Counseling
Social Work/Counseling
Orthotics/Prosthetics
Clinical Research
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
Visit Clinic Website
Adult Services Provided:
Neurology
Physical Therapy
Occupational Therapy
Genetic Counseling
Social Work/Counseling
Speech/Language Pathology
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Connecticut
Connecticut Children’s Medical Center, Farmington*
505 Farmington Ave
Farmington, CT 06032
Visit Clinic Website
Pediatric Services Provided:
Pediatric Neurology
Physiatry
Orthopedic Surgery
Physical Therapy
Orthotics/Prosthetics
Occupational Therapy
Nutrition
Clinical Director: Kevin J. Felice, DO
Appointments: Sharon McDermott, 860-612-6305
Email:
smcdermott@hfsc.org
Adult & Pediatric Services Provided:
Genetic Counseling
Neurology
Nutrition
Occupational Therapy
Orthotics/Prosthetics
Orthopedic Surgery
Physiatry
Physical Therapy
Podiatry
Social Work/Counseling
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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
Visit Clinic Website
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: 305-243-9173
Adult Services Provided:
Neurology
Physical Therapy
Orthotics/Prosthetics
Genetic Counseling
Social Work/Counseling
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Illinois
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
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
Clinical Director: Ryan D. Jacobson, MD
Appointments: Sherri Taylor-Kennedy, 312-942-4500
Adult & Pediatric Services Provided:
Genetic Counseling
Neurology
Nutrition
Occupational Therapy
Orthotics/Prosthetics
Orthopedic Surgery
Physiatry*
Physical Therapy
Podiatry*
Pulmonology
Social Work/Counseling
*Available by referral
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Iowa
Adult & Pediatric Services Provided:
Neurology
Orthopedic Surgery
Physical Therapy
Pediatrics
Occupational Therapy
Genetic Counseling
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Maryland
The Johns Hopkins CMT Center*
Department of Neurology
Rangos Bldg, Rm 248
855 N Wolfe St
Baltimore, MD 21205
Visit Clinic Website
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
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Massachusetts
Massachusetts General Hospital*
Neuromuscular Diagnostic Center
Charles River Plaza
165 Cambridge St Ste 820
Boston, MA 02114
Visit Clinic Website
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
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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
University of Michigan
MDA and CMT Clinic
2205 Commonwealth Blvd
Ann Arbor, MI 48105
Visit Clinic Website
Clinical Director: Dustin Nowacek, MD
Appointments: 734-936-9010
Adult & Pediatric Services Provided:
Neurology
Orthotics/Prosthetics
Physiatry
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Minnesota
University of Minnesota Health Neurology Clinic at Fairview Maple Grove Medical Center*
14500 99th Ave N
Maple Grove, MN 55369
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
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Missouri
University of Missouri*
Department of Neurology
1020 Hitt St
Columbia, MO 65212
Visit Clinic Website
Clinical Director: Raghav Govindarajan, MD, FAAN
Appointments: 573-882-1515
Adult & Pediatric Services Provided:
Neurology
Physiatry
Orthopedic Surgery
Occupational Therapy
Orthotics/Prosthetics
Genetic Counseling
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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
Visit Clinic Website
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
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North Carolina
University of North Carolina at Chapel Hill
Peripheral Neuropathy Center
194 Finley Golf Course Rd Ste 200
Chapel Hill, NC 27517
Visit Clinic Website
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
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Ohio
Clinical Director: Zarife Sahenk, MD, PhD
Appointments: 614-722-2203
Adult & Pediatric Services Provided:
Genetic Counseling
Neurology
Nutrition
Occupational Therapy
Orthopedic Surgery*
Orthotics/Prosthetics*
Physiatry*
Physical Therapy
*Available by referral
Ohio State University*
Wexner Medical Center
CarePoint East
543 Taylor Ave
Columbus, OH 43203
Visit Clinic Website
Adult & Pediatric Services Provided:
Genetic Counseling
Neurology
Occupational Therapy
Orthotics/Prosthetics
Physical Therapy
Podiatry
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Oregon
Clinical Director: Chafic Karam, MD
Appointments: 503-494-0744
Adult & Pediatric Services Provided:
Neurology
Physiatry
Physical Therapy
Occupational Therapy
Social Work/Counseling
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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
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
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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
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Utah
Clinical Director: Russell Butterfield, MD, PhD
Appointments: 801-585-7575
Adult & Pediatric Services Provided:
Neurology
Physiatry
Genetic Counseling
Orthotics/Prosthetics
Nutrition
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Washington
Neurology Clinic at University of Washington Medical Center*
1959 NE Pacific St, 8th Fl
Seattle, WA 98195
Visit Clinic Website
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
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Australia
Peripheral Neuropathy Management Clinic*
The Children’s Hospital at Westmead
Cnr Hawkesbury Rd and Hainsworth St
Westmead NSW 2145
Australia
Visit Clinic Website
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)
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Belgium
Neuromuscular Reference Centre
Department of Neurology, Antwerp University Hospital
Wilrijkstraat 10
B-2650 Edegem, Belgium
Visit Clinic Website
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.
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England
University College London Hospitals*
MRC Centre for Neuromuscular Diseases
8-11 Queen Square
London, England WC1N 3BG
Visit Clinic Website
Adult Services Provided:
Neurology
Orthopedic Surgery
Physical Therapy
Occupational Therapy*
Orthotics/Prosthetics*
Social Work/Counseling*
*Available upon referral
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Italy
C. Besta Neurological Institute (Milan)*
Clinic of Peripheral and Central Degenerative Neuropathies Unit
Via Celoria, 11 -20133 Milan, Italy
Visit Clinic Website
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.
