CureDuchenne Launches Next-Generation Data-Sharing Platform to Accelerate a Cure for Duchenne and Becker Muscular Dystrophy

CureDuchenne Link™ is a Centralized Hub with Data and Biosamples for Researchers Around the World

Newport Beach, CA (June 18, 2021) – CureDuchenne, a leading global nonprofit focused on finding and funding a cure for Duchenne muscular dystrophy, announces the launch of CureDuchenne Link, a centralized data hub that puts individuals with Duchenne and Becker firmly at the center of research. More than just a registry or biobank, CureDuchenne Link directly connects data and biosamples provided by the Duchenne and Becker muscular dystrophy community with scientists and drug developers around the globe.

By reducing the search for data connected to biosamples and removing barriers that typically cost researchers and drug developers time and money, CureDuchenne Link looks to accelerate exploration into new gene therapies, exon-skipping and other targeted Duchenne therapeutic development. Now clinicians, researchers and drug developers worldwide have access to a single, unified, HIPAA-compliant platform for a holistic view of biosamples integrated with clinical, genomic and patient reported data.

“With the launch of CureDuchenne Link, we hope to break down existing information silos and offer qualified researchers access to participant data and biosamples in one all-encompassing platform,” said Debra Miller, founder and CEO of CureDuchenne. “Duchenne and Becker are complex diseases with thousands of mutations. To effect real change, we need research into every one of those mutations. We turn to the entire community for help and encourage them to participate in a monumental shift for research and treatment development. Together, we WILL cure Duchenne.”

Participation is voluntary, free and widely accessible for all participants. CureDuchenne Link partnerships allow biosamples to be collected conveniently and efficiently, no matter where participants receive their care.

CureDuchenne Link harnesses the strengths of global leaders from technology and healthcare, including BC Platforms, DevIQ, GeneDx, Infinity Biologix, Precision for Medicine and TRiNDS. Lauren Morgenroth, CEO of Therapeutic Research in Neuromuscular Disorders Solutions (TRiNDS) added, “We are confident CureDuchenne Link will drive muscular dystrophy research forward, and are excited to support CureDuchenne by bringing our expertise to this monumental project.”

Nation-wide enrollment opens on July 9, 2021.

For more information, please visit cureduchennelink.org or email Joanna Kemp, Director, CureDuchenne Link at joanna@cureduchennelink.org. 

About CureDuchenne
CureDuchenne is recognized as a global leader in research, patient care and innovation for improving and extending the lives of those with Duchenne muscular dystrophy.  As the leading genetic killer of young boys, Duchenne affects more than 300,000 individuals living today. CureDuchenne is dedicated to finding and funding a cure for Duchenne by breaking the traditional charitable mold through an innovative venture philanthropy model that funds groundbreaking research, early diagnosis, and community education. For more information on how to help raise awareness and funds needed for research, please visit www.cureduchenne.org.  

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