Study Sites

The study is being conducted in 14 centers across the USAEurope, Japan, and Australia. You do not need to live in the study center cities in order to participate and funds are available for participants and a helper, if necessary, to travel to the nearest study center. 

Contact information for each study center will be posted below once the site is ready to begin recruiting patients. For more information or to determine eligibility, please email us at contact@dysferlinoutcomestudy.org or use the contact form.

Hover your mouse over the cities below to view the study site locations or see the complete list below.

UNITED STATES

Site Location

Status

Currently Enrolled

Washington University, School of Medicine

St. Louis, MO             
Matthew Harms, Alan Pestronk 

314-362-6981 #4

 

RECRUITING  0

Nationwide Children’s Hospital

Columbus, OH                             
Jerry Mendell, Kevin Flanigan

614-722-6961

 

RECRUITING  1

Children’s National Medical Center

Washington, DC                    
Jessica Nance

 

NOT YET RECRUITING  0

Carolinas Medical Center

Charlotte, NC                                           
Susan Sparks

704-333-3967

RECRUITING  4

JAPAN

Site Location

Status

Currently Enrolled

National Center of Neurology and Psychiatry

Tokyo, Japan
Madoka Mori-Yoshimura, Shin'ichi Takeda 

+81 42 341 2711

 

RECRUITING  4

 

AUSTRALIA

Site Location

Status

Currently Enrolled

The Children’s Hospital at Westmead

Sydney, Australia                
Nigel Clarke

 

NOT YET RECRUITING  0

 

EUROPE

Site Location

Status

Currently Enrolled

Institute of Genetic Medicine

Newcastle upon Tyne, UK
Kate Bushby 

+44 (0) 191 241 8941

 

RECRUITING 27

Friedrich-Baur-Institut, Munich, Germany         
Maggie Walter 

+49 (0) 89 5160 7400

 

RECRUITING 8

Muscle Research Unit, Charité

Berlin, Germany
Simone Spuler

+49 (0)30 450 540 504

 

RECRUITING 1

CHU La Timone

Marseille, France 
Emmanuelle Salort-Campana

 

NOT YET RECRUITING  0

Institut de Myologie

Paris, France
Tanya Stojkovic

 

NOT YET RECRUITING 0

Hospital Sant Pau

Barcelona, Spain  
Jordi Díaz-Manera, Isabel Illa 

+34 93 556 5977

 

RECRUITING 12

Hospital Universitario Virgen del Rocío

Sevilla, Spain 
Carmen Paradas

+34 95 592 3045

 

RECRUITING  0

University of Padova

Padova, Italy      
Corrado Angelini, Elena Pegoraro

+39 049 821 3625

RECRUITING 0

 

 

 

 

 

 

 

 

 

 

 

 

 

Image of earth by NASA. Photo taken by either Harrison Schmitt or Ron Evans (of the Apollo 17 crew). Taken from Wikimedia Commons.

Washington University, School of Medicine
St. Louis, MO
Matthew Harms
Nationwide Children’s Hospital
Columbus, OH
Jerry Mendell
Children’s National Medical Center
Washington, DC
Carolina Tesi-Rocha
Carolinas Medical Center
Charlotte, NC
Susan Sparks
National Center of Neurology and Psychiatry
Tokyo, Japan
Madoka Mori-Yoshimura
The Children’s Hospital at Westmead
Sydney, Australia
Nigel Clarke
Institute of Genetic Medicine
Newcastle upon Tyne, UK
Kate Bushby
Friedrich-Baur-Institut
Munich, Germany
Maggie Walter
Muscle Research Unit, Charité
Berlin, Germany
Simone Spuler
CHU La Timone
Marseille, France
Emmanuelle Salort-Campana
Institut de Myologie
Paris, France
Tanya Stojkovic
Hospital Sant Pau
Barcelona, Spain
Jordi Díaz-Manera
Hospital Universitario Virgen del Rocío
Sevilla, Spain
Carmen Paradas
University of Padova
Padova, Italy
Elena Pegoraro