WHAT IS DYSFERLINOPATHY?
LGMD2B/LGMDR2/MIYOSHI MYOPATHY 1
The Jain Foundation is exploring all avenues from the laboratory bench to bedside in the quest of identifying treatments for dysferlinopathy. Our innovative approach supports groundbreaking research, development of resources, diagnostic and educational programs, pre-clinical testing of promising treatments, and the development of tools needed to run successful clinical trials, such as a disease specific registry and outcome measures.
Through the collaborative effort of the many people involved in this effort, Jain Foundation staff, researchers, clinicians, patients, caregivers, regulatory agencies, and industry, we are driving real change for those with dysferlinopathy.
COS2 Recruitment is Complete
We are awaiting the official recruitment numbers, but believe we reached our goal of 200 participants. Thank you so much to everyone who is participating in COS2. The Clinical Outcome Study (COS2) is an opportunity for individuals with dysferlinopathy to participate in a clinical research study that aims to define outcome measures that are needed for the development and success of clinical trials. In addition, this study will provide a better understanding of dysferlinopathy, ensuring that optimal care and treatment is being provided for people with this condition. COS2 involves 4 visits over 2 years and is occurring at 16 sites in 9 countries.
COS2 is NOW RECRUITING
The Clinical Outcome Study (COS2) is an opportunity for individuals with dysferlinopathy to participate in a clinical research study that aims to define outcome measures that are needed for the development and success of clinical trials. In additional this study will provide a better understanding of dysferlinopathy, ensuring that optimal care and treatment is being provided for people with this condition. The study is accepting 200 participants who are >9 years of age, and both ambulant and non ambulant individuals. COS2 involves 4 visits over 2 years and is occurring at 16 sites in 9 countries.
MAKING AN IMPACT
FUNDING MISSION CRITICAL PROGRAMS
120+
We carefully select and monitor research projects, studies and other programs to advance our mission
INVESTING
IN THE CURE
$35+M
Over 35 million dollars invested in research, drug development and patient support and education
WORKING TOWARDS
THE FUTURE
COS
Our Clinical Outcome Study (COS) provides critical information for the successful design of clinical trials
PREPARING THE COMMUNITY FOR TRIALS
900+
We have identified over 900 genetically confirmed individuals with dysferlinopathy worldwide
MAKING AN IMPACT
FUNDING MISSION
CRITICAL PROGRAMS
120+
We carefully select and monitor research projects, studies and other programs to advance our mission
INVESTING
IN THE CURE
$35+M
Over 35 million dollars invested in research, drug development and patient support and education
WORKING TOWARDS
THE FUTURE
COS
Our Clinical Outcome Study (COS) provides critical information for the successful design of clinical trials
PREPARING THE COMMUNITY FOR TRIALS
900+
We have identified over 900 genetically confirmed individuals with dysferlinopathy worldwide
MAKING AN IMPACT
FUNDING MISSION CRITICAL PROGRAMS
120+
We carefully select and monitor research projects, studies and other programs to advance our mission
INVESTING
IN THE CURE
$35+M
Over 35 million dollars invested in research, drug development and patient support and education
WORKING TOWARDS
THE FUTURE
COS
Our Clinical Outcome Study (COS) provides critical information for the successful design of clinical trials
PREPARING THE COMMUNITY FOR TRIALS
900+
We have identified over 900 genetically confirmed individuals with dysferlinopathy worldwide