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

NOTE:  because many individuals are working from home due to Covid we suggest contacting study coordinators by email versus phone as this will likely lead to quicker response times

Site Location

Contact info

Recruitment Status

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

Oliver Doerr
Email:  oliver.doerr@wustl.edu 
Phone:  314-362-1626

Recruiting

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

Irene Panagopoulos
Email:  irene.panagopoulos@nationwidechildrens.org
Phone:  (614) 355-2602

Active

UC Irvine
Orange, CA USA
Dr. Tahseen Mozaffar

Jennifer Avelar, Clinical Research Coordinator
Email: Jbavelar@hs.uci.edu
Phone: 714-509-2665

Recruiting

Stanford Medical Center
Stanford, CA USA
Dr. John Day

 

Not yet recruiting

Rigshospitalet Neuromuskulær Klinik
Copenhagen, Denmark
Dr. John Vissing

Kuldeep Khatri
Email: kuldeep.kumar.khatri@regionh.dk

Recruiting

Institut de Myologie
Paris, France
Dr. Tanya Stojkovic

 

Dr. Giorgia Querin
Email: g.querin@institut-myologie.org
Phone: +33 1 42 16 58 70

Recruiting

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

 

Not yet recruiting

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

 Gloria Cantero

Email:  nmd.huvr.1@gmail.com

Recruiting

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

Ioana Croitoru
Email:  IOANA.CROITORUXX@osakidetza.eus
Phone:  0034943007027 (08.00 am-3 pm, Mon-Fri) 

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

Makiko Endo
Email:  endo@ncnp.go.jp
Phone:  +81-42-341-2712 (ext: 3841)

Recruiting

Clínica Dávila
Santiago, Chile
Dr. Jorge Bevilaqua

 

Not yet recruiting