Sites currently opened for patient recruitment:
-
Dr. Jeffrey Statland
University of Kansas
Fairway, Kansas
Contact: Kiley Higgs
+1 913-945-9922
-
Dr. Marisa Couluris
Shriners Children’s Hospital
Tampa, Florida
Contact: Margaret Gross-King
+1 813-972-2250 ext 7538
-
Dr. Bradley Troxler
University of Alabama
Birmingham, Alabama
Contact: Shelley Coskery, MSN, CPNP
+1 205-638-2007
-
Dr. Cori Daines
Banner University
Tucson, Arizona
Contact: Elizabeth Ryan, BS, RRT
+1 520-626-3125
-
Dr. Thomas Crawford
Johns Hopkins University
Baltimore, Maryland
Contact: Robin Worrell-Thorne
+1 443-287-6294
-
Dr. Carla Grosmann
Gillette Children’s Specialty Healthcare
Saint Paul, Minnesota
Contact: Jennifer Carpenter
+1 651-578-5226
-
Dr. Warren Marks
Cook Children’s Medical Center
Fort Worth, Texas
Contact: Heather Urbanek, RNC III
+1 682-885-1244
-
Dr. Oscar Henry Mayer
Children’s Hospital of Philadelphia
Philadelphia, Pennsylvania
Contact: Oscar Mayer, MD
+1 215-590-3749
-
Dr. Benjamin Brooks
Carolinas Healthcare System
Charlotte, North Carolina
Contact: Johnny Jones, MS
+1 704-446-1349
Contact: Lisa Ranzinger
+1 704-446-0803
-
Dr. James Woodward
Phoenix Children’s Hospital
Phoenix, Arizona
Contact: Natalia Argel, RN-BC, CPN
+1 602-933-0343
-
Dr. David Michelson
Loma Linda University Health System
Loma Linda, California
Contact: John Quintans
+1 909-558-5830 ext 55827
-
Dr. Craig McDonald
UC Davis Department of Physical Medicine and Rehabilitation
Sacramento, California
Contact: Contact: Alina Nicorici
+1 916-734-0968
-
Dr. Andre Prochoroff
MetroHealth Medical Center
Cleveland, Ohio
Contact: Alesia Cocklin, RN
+1 216-778-2057
-
Dr. Han Phan
Center for Integrative Rare Disease Research
Atlanta, Georgia
Contact: Han Phan, MD
+1 678-883-6897
-
Dr. Perry Shieh
David Geffen School of Medicine at UCLA
Los Angeles, California
Contact: Contact: Angela Ho
+1 310-825-3264
-
Dr. Leigh Ramos-Platt
Children’s Hospital Los Angeles
Los Angeles, California
Contact: Claudia Dozal
+1 323-361-5825
-
Dr. Kathy Mathews
University of Iowa
Iowa City
Contact: Chandra Miller, BSN, MA
+1 319-384-3618
-
Dr. Basil Darras
Children’s Hospital Boston
Boston, Massachusetts
Contact: Jennifer Dauriac
+1 617-355-2752
-
Dr. Cuixia Tian
Cincinnati Children’s Hospital
Cincinnati, Ohio
Contact: Dana Davis, BS
+1 513-636-5517
-
Dr. Emma Ciafaloni
University of Rochester
Rochester, New York
Contact: Patty Smith
+1 585-275-4339
Sites currently opened for patient recruitment:
-
Pr. Gunnar Buyse
University Hospital Leuven
Leuven, Belgium
Contact: Gunnar Buyse, MD
+32 16343845 or +32 16348496
-
Dr. Laurent Servais
CHR Citadelle
Liège, Belgium
Contact: Laurent Servais, MD
+ 32 43216982
-
Pr. Eugenio Mercuri
Policlinico Universitario "A.Gemelli"
Rome, Italy
Contact: Eugenio Mercuri, MD
+39 0671584657
-
Dr. Maria Grazia d’Angelo
Fondazione IRCCS Eugenio Medea
Bosisio Parini, Italy
Contact: Maria Grazia Nadia D'Angelo
+39 031877870
-
Dr. Luisa Politano
Seconda Università degli Studi di Napoli
Naples, Italy
Contact: Luisa Politano, MD
+39 0815665300
-
Dr. Francina Munell
Hospital Universitari Vall d’Hebron
Barcelona, Spain
-
Dr. Juan Jesus Vilchez
Hospital La Fe de Valencia
Valencia, Spain
-
Dr. Andrea Klein
Universitäts-Kinderspital beider Basel
Basel, Switzerland
Contact: Andrea Klein
+41 617042938
-
Dr. Michela Guglieri
John Walton Muscular Dystrophy Research Centre
Newcastle, UK
Contact: Michela Guglieri
+44 1912418757 or +44 1912418649
-
Dr. Rosaline Quinlivan
National Hospital for Neurology and Neurosurgery
London, UK
Contact: Rosaline Quinlivan
+44 203448 8132
-
Pr. Odile Boespflug-Tanguy
Hôpital Armand Trousseau
Paris, France
-
Dr. Jean-Marie Cuisset
CHRU de Lille
Lille, France
Contact: Jean-Marie Cuisset, MD
+33 320444057 or +33 320445325
-
Dr. Ulrike Walther-Louvier
CHRU de Montpellier
Montpellier, France
Contact: Ulrike Walther-Louvier, MD
+33 4 67 33 77 37
-
Dr. Claude Cancès
Hôpital des Enfants
Toulouse, France
Contact: Claude Cancès, MD
+33 534558728
-
Pr. Ulrike Schara
Universitätsklinikum Essen
Essen, Germany
Contact: Ulrike Schara
+49 2017234080
-
Dr. Anne-Marie Childs
Leeds Teaching Hospital NHS Trust
Leeds, UK
Contact: Anne-Marie Childs
+44 1133923113
-
Dr. Pinki Munot
Great Ormond Street Hospital for Children
London, UK
Contact: Pinki Munot
+44 2074059200
-
Dr. Tracey Willis
Robert Jones and Agnes Hunt Orthopaedic Hospital
Oswestry, UK
Contact: Tracey Willis
+44 1691404047
-
Dr. Sebahattin Cirak
Uniklinik Köln Klinik und Poliklinik für Kinder- und Jugendmedizin
Cologne, Germany
Contact:
-
Pr. Günther Bernert
Gottfried von Preyer'sches Kinderspital
Vienna, Austria
Contact: Dr. Sophia Zacher
+43 16019172617
-
Pr. Yann Péréon
Hôpital Hôtel Dieu
Nantes, France
Contact: Yann Péréon
+33 240083704
-
Pr. Wolfgang Müller-Felber
Zentrum für neuromuskuläre Erkrankungen
Munich, Germany
Contact: Wolfgang Müller-Felber, MD
+49 89440055112
Contact: Astrid Blaschek
-
Dr. Jessika Johannsen
Universitätsklinikum Hamburg-Eppendorf, Klinik für Kinder- und Jugendmedizin
Hamburg, Germany
Contact: Jessika Johannsen
+49 40741020400
-
Dr. Claudio Bruno
Istituto Giannina Gaslini
Genova, Italy
Contact: Claudio Bruno, MD
+39 1056362756
Contact: Marina Pedemonte
+39 1056362765
-
Pr. Giuseppe Vita
AOU Policlinico "G. Martino"
Messina, Italy
Contact: Giuseppe Vita
+39 0902212789
-
Dr. Valeria Sansone
Centro Clinico NEMO - Niguarda Hospital
Milan, Italy
Contact: Valeria Sansone
+39 2914337 or +39 2914331
-
Dr. Angela Berardinelli
Fondazione IRCCS “C. Mondino” di Pavia
Pavia, Italy
Contact: Angela Berardinelli
+39 382380288
-
Dr. Elena Pegoraro
Reparto Di Neurologia dell'Osperdale Di Padova
Padova, Italy
Contact: Elena Pegoraro
+39 3479031890
Contact: Luca Bello
+39 3396059583
-
Dr. Chiara Straathof
LUMC
Leiden, The Netherlands
Contact: Chiara Straathof, MD
+31 715265474
-
Pr. Imelda De Groot
Radboud university medical centre
Nijmegen, The Netherlands
Contact: Imelda J M De Groot, MD
+31 243614892
-
Dr. Andres Nascimiento
Hospital Sant Joan de Déu Neuropediatra
Barcelona, Spain
Contact: Andres Nascimento
+34 932804000
-
Dr. Marcos Madruga
Hospital Universitario Virgen del Rocio
Sevilla, Spain
Contact: Marcos Madruga
+34 955012431 or +34 639310203
-
Dr. Mar Tulinius
Sahlgrenska University Hospital
Gothenborg, Sweden
-
Dr Declan O’Rourke
Children’s University Hospital
Dublin, Ireland
Contact: Declan O'Rourke
+353 (1) 8784722
-
Dr Sithara Ramdas
Oxford University Hospitals NHS Foundation Trust
Oxford, UK
Contact: Sithara Ramdas
-
Dr Channa Hewamadduma
Royal Hallamshire Hospital
Sheffield, UK
Contact: Channa Hewamadduma
-
Dr. Ágnes Herczegfalvi
Semmelweis University
Budapest, Hungary
-
Pr. Dr Thomas Opladen
Universitätsklinikum Heidelberg Zentrum für Kinder- und Jugendmedizin
Heidelberg, Germany
-
Dr. Samual Pascual
Hospital Universitario La Paz
Madrid, Spain
Sites not yet opened for patient recruitment:
-
x
Pr Ivailo Tournev
Sofia Medical University
Sofia, Bulgaria
Sites currently opened for patient recruitment:
-
Pr. Yoram Nevo
Institute of Neurology at Schneider Children's Medical Center of Israel
Petah Tikva, Israel
Contact: Yoram Nevo, MD
+972 39253613
