Launch of world’s first Duchenne data hub, CureDuchenne Link™, driven by BCP technology, will improve access to critical data and help discover novel disease biomarkers
BC Platforms (BCP), a global leader in healthcare data management, analytics, and access and CureDuchenne, a leading global non-profit organisation focused on finding and funding a cure for Duchenne muscular dystrophy, today announced a new collaboration. As part of the collaboration, CureDuchenne has integrated BCP’s Discovery and Research Platform (DRP) into its newly launched CureDuchenne Link™ global data hub.
Wider reaching than a registry or biobank, CureDuchenne Link™ directly connects data and biosamples provided by the Duchenne and Becker muscular dystrophy community to scientists and those involved with drug development. By reducing the need to search for data connected to biosamples, this data hub helps accelerate the discovery of biomarkers, as well as the development of future treatments, including new gene therapies and exon-skipping approaches. BCP’s role in this 10-year project is to provide a data hub that can fully integrate with a variety of data sources through its DRP, including aggregate data management and data sharing. BCP will support data repository storage, as well as management and analysis tools for genomic, phenotypic, sample, and whole genome sequencing data.
Debra Miller, Founder and CEO of CureDuchenne, said: “Working with partners such as BCP ensures CureDuchenne Link™ delivers a world-class data hub. This monumental project breaks down existing information silos and offers qualified researchers access to participant data and biosamples in one all-encompassing platform. CureDuchenne Link can effect real change for Duchenne research and this is propelled through the expertise of the BCP team.”
Nino Da Silva, Deputy Managing Director, BCP, commented; “We are delighted to support CureDuchenne with the launch of CureDuchenne Link™, leveraging our DRP. It enables distributed analysis models and scales tertiary analysis of genomic and clinical data combined. The repository will provide an invaluable single, unified, HIPAA-compliant platform accessible by clinicians, researchers, and drug developers to deliver novel insights into drug development. Ultimately, we hope that the data hub will help scientists address this devastating disease and its high unmet medical need. As part of our vision to build the world’s leading analytics platform for healthcare and industry, our interoperable data infrastructure can provide a strong backbone for global collaborations such as CureDuchenne Link™.
Duchenne is a rare, progressive muscle-wasting disease affecting around 1 in every 5,000 boys, including around 15,000 individuals in the US, and approximately 300,000 worldwide. There are thousands of mutations associated with Duchenne, resulting in a wide variance in how the disease progresses as well as its response to therapies. It is typically diagnosed around 5 years of age, leading to an inability to walk by age 12, and death around age 30. Becker muscular dystrophy is a form of the disease related to Duchenne.
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.