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.
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 |
Helen Sutherland |
Recruiting |
Columbia University Medical Center |
|
Not yet recruiting |
Carolinas Medical Center |
|
Not yet recruiting |
Washington University |
Oliver Doerr |
Recruiting |
Nationwide Children’s Hospital |
Irene Panagopoulos |
Active |
UC Irvine |
Jennifer Avelar, Clinical Research Coordinator |
Recruiting |
Stanford Medical Center |
|
Not yet recruiting |
Rigshospitalet Neuromuskulær Klinik |
Kuldeep Khatri |
Recruiting |
Institut de Myologie |
Dr. Giorgia Querin |
Recruiting |
Hospital Sant Pau |
|
Not yet recruiting |
Hospital Universitario, Virgen del Rocío |
Gloria Cantero Email: nmd.huvr.1@gmail.com |
Recruiting |
Hospital Universitario Donostia |
Ioana Croitoru |
Recruiting |
University of Padova |
|
Not yet recruiting |
National Center of Neurology and Psychiatry (NCNP) |
Makiko Endo |
Recruiting |
Clínica Dávila |
|
Not yet recruiting |