Page 25 - 2021 Summer CMTA Report

CMTA CENTERS OF EXCELLENCE

CMTA CENTERS OF EXCELLENCE are
patient-centric, multidisciplinary CMT clinics where
children, adults and families affected by CMT can be
assured of receiving comprehensive care by a team
of CMT experts. The Centers roughly correspond
to the 21 international sites that make up the NIH
Inherited Neuropathy Consortium (INC)—a group
of academic medical centers, patient support
organizations and clinical research resources
sponsored in part by the CMTA. The centers are
becoming even more important as the CMTA begins
clinical trials, which 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.
Much of that information will be supplied by the
Centers of Excellence.

CALIFORNIA ILLINOIS MISSOURI PENNSYLVANIA INTERNATIONAL
LOS ANGELES (ADULT & PEDIATRIC) CHICAGO (ADULT & PEDIATRIC) COLUMBIA (ADULT & PEDIATRIC) PHILADELPHIA (ADULT) LOCATIONS:
Cedars-Sinai Northwestern Memorial Hospital University of Missouri* Hospital of the University of
Clinical Directors: Clinical Director: Daniela Maria Clinical Director: Pennsylvania* AUSTRALIA
Matthew J. Burford, MD, and Menichella, MD, PhD Raghav Govindarajan, MD, FAAN Clinical Director: WESTMEAD (PEDIATRIC)
Richard A. Lewis, MD Appts: 312-695-7950 Appts: 573-882-1515 Steven Scherer, MD, PhD The Children’s Hospital at Westmead*
Appts: Tara A. Jones, MS, CGC, University of Illinois at Chicago ST. LOUIS (ADULT & PEDIATRIC) Scheduling for Clinic Visits: Clinical Director: Manoj Menezes, MD
310-423-4268 Clinical Director: Washington University Shana Millner, 215-662-3606 Research Director: Joshua Burns, PhD
PALO ALTO (PEDIATRIC) Charles K. Abrams, MD, PhD School of Medicine Scheduling for Research Visits: Appts: (02) 98451325
Stanford Children’s Health* Appts:312-996-4780 Clinical Director: Stefanie Geisler, MD Dragan Vujovic, 215-898-0180 daralyn.hodgson@health.nsw.gov.au
Clinical Directors: John Day, MD, PhD, Rush University Appts: 314-362-6981 PHILADELPHIA (PEDIATRIC) BELGIUM
and Ana Tesi Rocha, MD Clinical Director: Ryan D. Jacobson, MD Hospital of the University of
Appts: 650-723-0993 Appts: Sherri Taylor-Kennedy, NEW JERSEY Pennsylvania* B-2650 EDEGEM
PALO ALTO (ADULT) 312-942-4500 HACKENSACK (ADULT & PEDIATRIC) Clinical Director: Sabrina Yum, MD (ADULT & PEDIATRIC)
Stanford Neuromuscular Program* IOWA Hackensack University Medical Center Appts: Hannah Borger, 215-590-1719 Antwerp University Hospital
Clinical Director: John Day, MD, PhD Clinical Director: PITTSBURGH (ADULT) Clinical Director:
Appts: 650-723-6469 IOWA CITY (ADULT & PEDIATRIC) Florian Thomas, MD, PhD University of Pittsburgh Medical Prof. Dr. Peter De Jonghe
Appts: +32 3 821 34 23
SAN FRANCISCO (PEDIATRIC) University of Iowa Hospitals & Clinics* Appts: Annerys Santos, 551-996-1324 Center (UPMC) Neuromusculaire@uza.be
Clinical Director: Michael E. Shy, MD
University of California, San Francisco Appts: 319-384-6362 NEW YORK Clinical Director: Sasha Zivkovic, MD
Clinical Director: Alex Fay, MD, PhD Appts: 412-692-4917 ENGLAND
Appts: 415-353-7596 KENTUCKY ROCHESTER (ADULT & PEDIATRIC) PITTSBURGH (PEDIATRIC) LONDON (ADULT)
University of Rochester*
COLORADO LOUISVILLE (ADULT) Clinical Director: David Herrmann, MD Children’s Hospital of Pittsburgh University College London Hospitals*
Clinical Director:
Clinical Director: Mary M. Reilly, MD
AURORA (ADULT) University of Louisville Appts: 585-275-2559 Hodas Abdel-Hamid, MD Appts: Mariola Skorupinska,
Clinical Director:
University of Colorado Zeng Y. Wang, MD, PhD NORTH CAROLINA Appts: 412-692-6106 (0044)2034488019
Clinical Director: Vera Fridman, MD Appts: Anson Ashburn, 502-588-4800 TEXAS mariola.skorupinska@uclh.nhs.uk
Appts: 720-848-2080 CHAPEL HILL (ADULT & PEDIATRIC)
University of North Carolina
AURORA (PEDIATRIC) MARYLAND Clinical Director: Rebecca Traub, MD DALLAS (PEDIATRIC) ITALY
Children’s Hospital Colorado BALTIMORE (ADULT & PEDIATRIC) Appts: 984-974-4401 University of Texas Southwestern MILAN (ADULT & PEDIATRIC)
Clinical Director: Michele Yang, MD Johns Hopkins University* Clinical Directors: Diana Castro, MD, C. Besta Neurological Institute*
Appts: Alison Ballard, 720-777-3907 Clinical Director: Thomas Lloyd, MD OHIO and Susan Iannaccone, MD Clinical Director: Davide Pareyson, MD
Appts: Lindsay Adkins, 214-456-2768
CONNECTICUT Appts: (Adult) 410-955-2227, COLUMBUS (ADULT & PEDIATRIC) BEDFORD (ADULT 16+) Appts: +39-02-70631911
sara.nuzzo@istituto-besta.it
(Pediatric) 410-955-4259
FARMINGTON (PEDIATRIC) Nationwide Children’s Hospital Kane Hall Barry Neurology
Clinical Director:
Connecticut Children’s Medical MASSACHUSETTS Zarife Sahenk, MD, PhD Clinical Director:
Center, Farmington* BOSTON (ADULT & PEDIATRIC) Appts: 614-722-2203 Sharique Ansari, MD, MPH
Clinical Director: Gyula Acsadi, MD, PhD Massachusetts General Hospital Appts: 817-267-6290, option 4
Appts: Nanci Stolgitis, RN, Clinical Director: COLUMBUS (ADULT & PEDIATRIC) UTAH
860-837-7500 Reza Seyedsadjadi, MD Ohio State University, Wexner
Medical Center*
NEW BRITAIN (ADULT & PEDIATRIC) Appts: Tamika Scott, 617-726-3642 Clinical Director: SALT LAKE CITY * Denotes the CMTA Centers
Hospital for Special Care Samantha LoRusso, MD (ADULT & PEDIATRIC) of Excellence that are included
Clinical Director: Kevin J. Felice, DO MICHIGAN Appts: 614-293-4969 University of Utah* in the National Institutes of
Appts: Sharon McDermott, DETROIT (ADULT) Clinical Director: Health Inherited Neuropathy
860-612-6305 Wayne State University School of OREGON Russell Butterfield, MD, PhD Consortium (INC). The INC is
Appts: 801-585-7575
FLORIDA Medicine and Detroit Medical Center* PORTLAND (ADULT & PEDIATRIC) WASHINGTON co-sponsored by the CMTA and
Clinical Director: Jun Li, MD, PhD
the MDA. Worldwide more than
ORLANDO (PEDIATRIC) Appts: 313-745-4275 Oregon Health & Science University 10,000 patients with CMT have
Clinical Director: Chafic Karam, MD
Nemours Children’s Hospital* ANN ARBOR (ADULT & PEDIATRIC) Appts: 503-494-0744 SEATTLE (ADULT) been enrolled in protocols,
Clinical Director: Migvis Monduy, MD University of Michigan University of Washington and their data, de-identified
Clinic Coordinator: Kelly Wydronkowski Clinical Director: Dustin Nowacek, MD Medical Center* to protect patient privacy, is
Appts: 407-650-7715 Appts: 734-936-9010 Clinical Director: Michael Weiss, MD housed in a common repository.
Appts: Gail Schessler, 206-598-7688
GAINESVILLE (ADULT & PEDIATRIC) As a result of this collaboration,
University of Florida MINNESOTA WASHINGTON, DC a new CMT evaluation
Clinical Director: MAPLE GROVE (ADULT) (PEDIATRIC TO AGE 21) scale for children has been
James Wymer, MD, PhD University of Minnesota* Children’s National Hospital established, along with a new
Appts: 352-294-5400 Clinical Director: David Walk, MD Clinical Director: evaluation system for adults,
and an infrastructure has been
MIAMI (ADULT) Appts: 763-898-1000 Diana Bharucha-Goebel, MD developed to perform natural
University of Miami* Appts: Kathleen Smart, 202-476-6193 history studies and clinical trials
Clinical Director: Mario Saporta, MD for CMT.
Appts: 305-243-9173
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SUMMER 2021 THE CMTA REPORT