COS2 Clinic Sites

The study is being conducted at 15 centers across the USA, Europe, Japan, and Chile.  Recruitment will begin on a rolling basis as each site obtains the necessary regulatory approval.  Please check below for location, recruitment status, clinic contact information, and number of recruited participants.

The goal is to recruit 200 genetically confirmed dysferlinopathy patients.  This includes both ambulant and non-ambulant individuals; however, there are more spots for those who are ambulant then non-ambulant.  COS2 is open to individuals who participated in COS, as well as new participants.  However, please note that if you participated in the original COS study you are NOT automatically part of the COS2 study.  Both original COS participants and new participants must contact the relevant COS2 site and go through the recruitment process if they are interested in participating.

For questions on whether you are genetically confirmed or how to get genetically confirmed with dysferlinopathy please contact the Jain Foundation at patients@jain-foundation.org or 425-882-1492.

 COS2 Site Map

Site Location

Contact info

Recruitment Status

Number of participants

Institute of Genetic Medicine
Newcastle upon Tyne, UK
Dr. Volker Straub

Helen Sutherland
Email:  helen.sutherland@newcastle.ac.uk
Tel:  (0044) (0) 191 241 8941

Recruiting

 

Columbia University Medical Center
New York, NY USA
Dr. Matthew Harms

 

Not yet recruiting

 

Carolinas Medical Center
Charlotte, NC USA
Dr. Elena Bravver

 

Not yet recruiting

 

Washington University
School of Medicine
St. Louis, MO USA
Dr. Alan Pestronk

 

Not yet recruiting

 

Nationwide Children’s Hospital
Columbus, OH USA
Dr. Jerry Mendell and Linda Lowes

 

Not yet recruiting

 

UC Irvine
Orange, CA USA
Dr. Tahseen Mozaffar

 

Not yet recruiting

 

Stanford Medical Center
Stanford, CA USA
Dr. John Day

 

Not yet recruiting

 

Rigshospitalet Neuromuskulær Klinik
Copenhagen, Denmark
Dr. John Vissing

 

Not yet recruiting

 

Institut de Myologie
Paris, France
Dr. Tanya Stojkovic

 

Not yet recruiting

 

Hospital Sant Pau
Barcelona, Spain
Dr. Jordi Díaz-Manera

 

Not yet recruiting

 

Hospital Universitario, Virgen del Rocío
Sevilla, Spain
Dr. Carmen Paradas

 

Not yet recruiting

 

Hospital Universitario Donostia
San Sebastian, Spain
Dr. Roberto Fernandez Torron

 

Not yet recruiting

 

University of Padova
Padova, Italy
Dr. Elena Pegoraro  

 

Not yet recruiting

 

National Center of Neurology and Psychiatry (NCNP)
Tokyo, Japan
Dr. Shin’ichi Takeda
Dr. Madoka Mori-Yoshimura

 

Not yet recruiting

 

Clínica Dávila
Santiago, Chile
Dr. Jorge Bevilaqua

 

Not yet recruiting