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.
Although all the Centers of Excellence listed below are all comprised of multi-disciplinary teams of CMT specialists, the CMTA’s Centers of Excellence affiliated with the Inherited Neuropathy Consortium or INC (marked with an asterisk), go a step further by collecting and recording genetic, biologic and other data from people with the disease.
In essence, the Inherited Neuropathy Consortium is an integrated group of academic medical centers, patient support organizations, and clinical research resources dedicated to conducting clinical research in different forms of CMT and improving the care of patients. Funded by the National Institutes of Health (NIH), the INC is part of the Rare Diseases Clinical Research Network.
Over the past few years, the INC has carried out studies; identified multiple genetic causes of CMT; begun testing possible markers for CMT; enrolled thousands of patients in its studies; trained young scientists in CMT research; and created a website that provides information about CMT to patients, families and researchers. The INC’s future goals include conducting further natural history studies to enable clinical trials, continuing the search for biological features (biomarkers) of disease; continuing to identify novel genetic causes and modifiers of CMT, and maintaining and updating its website to continue providing information to patients, their families, doctors and researchers. Researchers say that understanding the differences among the various types of CMT will improve the effectiveness of clinical trials and hasten the development of targeted treatments.
As the CMTA begins clinical trials for candidate therapies, data derived from these ongoing studies will become even more important. 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.
If you believe that your clinic/hospital would qualify as a CMTA Center of Excellence and you would like to apply to be receive the distinction, please click here.
U.S. CMTA Centers of Excellence
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California
Adult & Pediatric Services Provided:Cedars-Sinai Charcot-Marie-Tooth/Hereditary Neuropathy Center*
127 S San Vicente Blvd
Ste A6600
Los Angeles, CA 90048
Visit Clinic WebsiteClinical Directors: Matthew J. Burford, MD, and Richard A. Lewis, MD
Appointments: Tara A. Jones, MS, CGC, 310-423-4268
Email: Tara.Jones@cshs.org
Neurology
EMG/Nerve Conduction Studies
Orthopedic Surgery
Pulmonology
Physical Therapy
Genetic Counseling
Social Work/Counseling
Orthotics/Prosthetics
Clinical Research
Pediatric Services Provided:Clinical Directors: John Day, MD, PhD, and Ana Tesi Rocha, MD
Appointments: 650-723-0993
Neurology
Orthopedic Surgery
Occupational Therapy
Genetic Counseling
Speech/Language PathologyAdult Services Provided:Stanford Neuromuscular Program*
Stanford Neuroscience Health Center
213 Quarry Rd
Palo Alto, CA 94304
Visit Clinic Website
Neurology
Physical Therapy
Occupational Therapy
Genetic Counseling
Social Work/Counseling
Speech/Language PathologyPediatric Services Provided:University of California, San Francisco
1825 4th St, 6th Fl Ste A
San Francisco, CA 94158
Visit Clinic Website
Neurology
Physical Therapy
Physiatry
Occupational Therapy
Orthopedic Surgery
Genetic Counseling
Social Work/Counseling
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Colorado
Adult Services Provided:University of Colorado
Department of Neurology
1635 Aurora Ct Ste 4200
Aurora, CO 80045
Visit Clinic WebsiteClinical Director: Vera Fridman, MD
Appointments: 720-848-2080
EMG/Nerve Conduction Studies
Genetic Counseling
Neurology
Occupational Therapy
Orthotics/Prosthetics
Physical Therapy
Pulmonology
Social Work/Counseling
Clinical ResearchPediatric Services Provided:Clinical Director: Michele Yang, MD
Appointments: Alison Ballard, 720-777-3907
Alison.Ballard@childrenscolorado.org
Genetic Counseling
Neurology
Occupational Therapy
Orthotics/Prosthetics
Orthopedic Surgery
Physiatry
Physical Therapy
Social Work/Counseling
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Connecticut
Pediatric Services Provided:Connecticut Children’s Medical Center, Farmington*
505 Farmington Ave
Farmington, CT 06032
Visit Clinic WebsiteClinical Director: Gyula Acsadi, MD, PhD
Appointments: Nanci Stolgitis, RN 860-837-7500
Email: Nstolgitis@connecticutchildrens.org
Pediatric Neurology
Physiatry
Orthopedic Surgery
Physical Therapy
Orthotics/Prosthetics
Occupational Therapy
Nutrition
Adult & Pediatric Services Provided:Clinical Director: Kevin J. Felice, DO
Appointments: Sharon McDermott, 860-612-6305
Email: smcdermott@hfsc.org
Genetic Counseling
Neurology
Nutrition
Occupational Therapy
Orthotics/Prosthetics
Orthopedic Surgery
Physiatry
Physical Therapy
Podiatry
Social Work/Counseling
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Florida
Pediatric Services Provided:Nemours Children’s Hospital*
6535 Nemours Pkwy
Orlando, FL 32827Clinical Director: Migvis Monduy, MD
Clinic Coordinator: Kelly Wydronkowski
Appointments: 407-650-7715
Neurology
Orthopedic Surgery
Physiatry
Physical Therapy
Occupational Therapy
Genetic Counseling
Orthotics/Prosthetics
Pulmonology
Cardiology
Nutrition
Social Work/Counseling
Adult & Pediatric Services Provided:University of Florida
Norman Fixel Institute for Neurological Diseases
3009 SW Williston Rd
Gainesville, FL 32608
Visit Clinic WebsiteClinical Director: James Wymer, MD, PhD
Appointments: 352-294-5400
Neurology
Occupational Therapy
Orthotics/Prosthetics
Pain Management
Podiatry
Respiratory Therapy
Social Work/Counseling
Adult Services Provided:University of Miami*
Professional Arts Center
1150 NW 14th St Ste 609
Miami, FL 33136Clinical Director: Mario Saporta, MD
Appointments: 305-243-9173
Neurology
Physical Therapy
Orthotics/Prosthetics
Genetic Counseling
Social Work/Counseling
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Illinois
Adult & Pediatric Services Provided:Department of Neurology Peripheral Neuropathy/Division of Neuromuscular Disease
259 E Erie St
Chicago, IL 60611Clinical Director: Daniela Maria Menichella, MD, PhD
Appointments: 312-695-7950
Genetic Counseling
Neurology
Nutrition
Occupational Therapy
Orthotics/Prosthetics
Physiatry
Physical Therapy
Social Work/Counseling
Adult & Pediatric Services Provided:Clinical Director: Charles K. Abrams, MD, PhD
Appointments:312-996-4780
Neurology
Nutrition
Occupational Therapy
Orthotics/Prosthetics
Orthopedic Surgery*
Physiatry*
Physical Therapy
Podiatry*
Speech/Language Pathology
Social Work/Counseling
*Available by referralAdult & Pediatric Services Provided:Clinical Director: Ryan D. Jacobson, MD
Appointments: Sherri Taylor-Kennedy, 312-942-4500
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: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
Neurology
Orthopedic Surgery
Physical Therapy
Pediatrics
Occupational Therapy
Genetic Counseling
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Kentucky
Adult Services Provided:Clinical Director: Zeng Y. Wang, MD, PhD
Appointments: Anson Ashburn, 502-588-4800
Email: anson.ashburn@uoflhealth.org
Neurology
Genetic Counseling
Social Work/Counseling
Physical Therapy*
Podiatry*
Orthotics/Prosthetics*
*Available by referral
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Maryland
Adult & Pediatric Services Provided:The Johns Hopkins CMT Center*
Department of Neurology
Rangos Bldg, Rm 248
855 N Wolfe St
Baltimore, MD 21205
Visit Clinic WebsiteClinical Director: Thomas Lloyd, MD
Appointments: (Adult) 410-955-2227
(Pediatric) 410-955-4259
Contact: Theresa Cox thutson2@jhmi.edu
Neurology
Physical Therapy
Occupational Therapy
Genetic Counseling
Orthotics/Prosthetics
Durable Medical Equipment
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Massachusetts
Adult & Pediatric Services Provided:Massachusetts General Hospital*
Neuromuscular Diagnostic Center
Charles River Plaza
165 Cambridge St Ste 820
Boston, MA 02114
Visit Clinic WebsiteClinical Director: Reza Seyedsadjadi, MD
Appointments: Tamika Scott, 617-726-3642
Email: tscott2@partners.org
Neurology
Physical Therapy
Genetic Counseling
Social Work/Counseling
Orthotics/Prosthetics
Clinical Research
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Michigan
Adult Services Provided:Wayne State University School of Medicine and Detroit Medical Center*
4201 St. Antoine
UHC-8D
Detroit, MI 48201Clinical Director: Jun Li, MD, PhD
Appointments: 313-745-4275
Neurology
Physical Therapy
Genetic Counseling
EMG/Nerve Conduction Studies
Adult & Pediatric Services Provided: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
Neurology
Orthotics/Prosthetics
Physiatry
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Minnesota
Adult Services Provided:University of Minnesota Health Neurology Clinic at Fairview Maple Grove Medical Center*
14500 99th Ave N
Maple Grove, MN 55369
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
Adult & Pediatric Services Provided:University of Missouri*
Department of Neurology
1020 Hitt St
Columbia, MO 65212
Visit Clinic WebsiteClinical Director: Raghav Govindarajan, MD, FAAN
Appointments: 573-882-1515
Neurology
Physiatry
Orthopedic Surgery
Occupational Therapy
Orthotics/Prosthetics
Genetic Counseling
Adult & Pediatric Services Provided:Washington University School of Medicine, St. Louis
660 S Euclid Ave
St. Louis, MO 63110
Visit Clinic WebsiteClinical Director: Stefanie Geisler, MD
Appointments: 314-362-6981
Neurology
EMG/Nerve Conduction
Physical Therapy
Orthotics/Prosthetics
Social Work/Counseling
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New Jersey
Adult & Pediatric Services Provided:Clinical Director: Florian Thomas, MD, PhD
Appointments: Annerys Santos, 551-996-1324
Email: Annerys.Santos@HMHN.org
Neurology
Orthopedic Surgery
Physical Therapy
Occupational Therapy
Genetic Counseling
Nutrition
Social Work/Counseling
Orthotics/Prosthetics
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New York
Adult & Pediatric Services Provided: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 WebsiteClinical Director: David Herrmann, MD
Appointments: 585-275-2559
Email: CMT_Studies@urmc.rochester.edu
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
Adult & Pediatric Services Provided:University of North Carolina at Chapel Hill
Peripheral Neuropathy Center
194 Finley Golf Course Rd Ste 200
Chapel Hill, NC 27517
Visit Clinic WebsiteClinical Director: Rebecca Traub, MD
Appointments: 984-974-4401
Genetic Counseling
Neurology
Occupational Therapy
Orthopedic Surgery
Orthotics/Prosthetics*
Physiatry
Physical Therapy
Podiatry
*Available by referral
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Ohio
Adult & Pediatric Services Provided:Clinical Director: Zarife Sahenk, MD, PhD Appointments: 614-722-2203
Genetic Counseling
Neurology
Nutrition
Occupational Therapy
Orthopedic Surgery*
Orthotics/Prosthetics*
Physiatry*
Physical Therapy
*Available by referralAdult & Pediatric Services Provided:Ohio State University*
Wexner Medical Center
Martha Morehouse Outpatient Care
2050 Kenny Rd
Columbus, OH 43221
Visit Clinic WebsiteClinical Director: Michael Isfort, MD
Appointments: 614-293-4969
Genetic Counseling
Neurology
Occupational Therapy
Orthotics/Prosthetics
Physical Therapy
Podiatry
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Oregon
Adult & Pediatric Services Provided:Clinical Director: Chafic Karam, MD Appointments: 503-494-0744
Neurology
Physiatry
Physical Therapy
Occupational Therapy
Social Work/Counseling
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Pennsylvania
Adult Services Provided: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 WebsiteClinical Director: Steven Scherer, MD, PhD
Office: 215-349-5313
Scheduling for Clinic Visits:
Shana Millner, 215-662-3606
Shana.Millner@pennmedicine.upenn.edu
Scheduling for Research Visits:
Dragan Vujovic, 215-898-0180
Dragan.Vujovic@Pennmedicine.upenn.edu
Neurology
Physical Therapy
Occupational Therapy
Genetic Counseling
Pediatric Services Provided: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 WebsiteClinical Director: Sabrina Yum, MD
Appointments: Hannah Borger, Clinic Coordinator, 215-590-1719
Email: Neuromuscular@email.chop.edu
Neurology
Orthopedic Surgery
Physiatry*
Physical Therapy
Occupational Therapy
Genetic Counseling
Nutrition
*Available by referralAdult Services Provided:University of Pittsburgh Medical Center (UPMC)
Lilian Kaufman Bldg
3471 Fifth Ave #810
Pittsburgh, PA 15213Clinical Director: Sasha Zivkovic, MD
Appointments: 412-692-4917
Neurology
Physiatry
Pediatric Services Provided:Children’s Hospital of Pittsburgh
4401 Penn Ave 2nd Fl
Pittsburgh, PA 15224Clinical Director: Hodas Abdel-Hamid, MD
Appointments: 412-692-6106
Neurology
Physical Therapy
Genetic Counseling
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Texas
Pediatric Services Provided:CMT Clinic at Children’s Health Specialty Center
2350 N Stemmons Fwy
Dallas, TX 75207
Visit Clinic WebsiteClinical Directors: Diana Castro, MD, and Susan Iannaccone, MD
Appointments: Lindsay Adkins, NM Nurse, 214-456-2768
Neurology
Orthopedic Surgery
Physical Therapy
Occupational Therapy
Genetic Counseling
Social Work/Counseling
Nutrition
Adult (16+) Services Provided:Clinical Director: Sharique Ansari, MD, MPH*
Appointments: 817-267-6290, option 4
Genetic Counseling
Neurology*
Nutrition
Occupational Therapy
Orthotics/Prosthetics
Orthopedic Surgery
Physiatry
Physical Therapy
Podiatry
Social Work/Counseling
*Please note: Dr. Ansari is the only neurologist at Kane Hall Barry involved in diagnosing and treating CMT.
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Utah
Adult & Pediatric Services Provided:Clinical Director: Russell Butterfield, MD, PhD
Appointments: 801-585-7575
Neurology
Physiatry
Genetic Counseling
Orthotics/Prosthetics
Nutrition
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Washington
Adult Services Provided:Neurology Clinic at University of Washington Medical Center*
1959 NE Pacific St, 8th Fl
Seattle, WA 98195
Visit Clinic WebsiteClinical Director: Michael Weiss, MD
Appointments: Gail Schessler, Clinic Coordinator, 206-598-7688
Email: gailm9@uw.edu
Neurology
Physiatry
Neurogenetics
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Washington, DC
Pediatric (to age 21) Services Provided:Neuroscience Clinic—Children’s National Hospital
111 Michigan Ave NW
Washington, DC 20010
Visit Clinic WebsiteClinical Director: Diana Bharucha-Goebel, MD
Appointments: Kathleen Smart, 202-476-6193
Email: ksmart@childrensnational.org
Neurology
Nutrition
Occupational Therapy
Orthopedic Surgery
Physiatry
Physical Therapy
Social Work/Counseling
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International CMTA Centers of Excellence
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Australia
Pediatric Services Provided:Peripheral Neuropathy Management Clinic*
The Children’s Hospital at Westmead
Cnr Hawkesbury Rd and Hainsworth St
Westmead NSW 2145
Australia
Visit Clinic WebsiteClinical Director: Manoj Menezes, MD
Research Director: Joshua Burns, PhD
Appointments: (02) 98451325
Email:daralyn.hodgson@health.nsw.gov.au
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
Adult & Pediatric Services Provided:Neuromuscular Reference Centre
Department of Neurology, Antwerp University Hospital
Wilrijkstraat 10
B-2650 Edegem, Belgium
Visit Clinic WebsiteClinical Director: Prof. Dr. Peter De Jonghe
Appointments: +32 3 821 34 23
Email: Neuromusculaire@uza.be
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
Adult Services Provided:University College London Hospitals*
MRC Centre for Neuromuscular Diseases
8-11 Queen Square
London, England WC1N 3BG
Visit Clinic WebsiteClinical Director: Mary M. Reilly, MD
Appointments: Mariola Skorupinska, (0044)2034488019
Email: mariola.skorupinska@uclh.nhs.uk
Neurology
Orthopedic Surgery
Physical Therapy
Occupational Therapy*
Orthotics/Prosthetics*
Social Work/Counseling*
*Available upon referral
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Italy
Adult & Pediatric Services Provided:C. Besta Neurological Institute (Milan)*
Clinic of Peripheral and Central Degenerative Neuropathies Unit
Via Celoria, 11 -20133 Milan, Italy
Visit Clinic WebsiteClinical Director: Davide Pareyson. MD
Appointments: +39-02-70631911
Email: sara.nuzzo@istituto-besta.it
Neurology
Physical Therapy
(Referral to the following services can be arranged where necessary: Physiatrist, Orthopedic Surgeon, Orthotist, Genetic Counselor, Psychiatrist, Psychologist)
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