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
ZURICH and NEWPORT BEACH, Calif., June 18, 2021 /PRNewswire/ -- 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.
About BC Platforms
BC Platforms is a global leader in providing a powerful data and technology platform for personalized medicine, accelerating the translation of insights into clinical practice. Our technology drives the infinite loop between personalized care and research discoveries, leveraging latest science, deep technical expertise, strategic partnerships, and harmonized, diverse data collections. Our high performing genomic data discovery and analytics platform enables flexible data integration, secure analysis and interpretation of molecular and clinical information. Additionally, BC Platforms has developed a Global Data Partner Network BCRQUEST.com, which provides genomic and clinical cohort data for pharmaceutical and medical research and development. BC Platforms' vision is to build the world's leading analytics platform for healthcare and industry, providing access to diverse genomic and clinical data and samples from more than 5 million subjects, consolidated from a global network of Data Partners.
Founded in 1997 from an MIT Whitehead project spinoff, the Company has a strong scientific heritage underpinned by over 20 years of working in close collaboration with a network of leading researchers, developers, and industry partners. BC Platforms has global operations with its headquarters in Zurich, Switzerland, research and development in Espoo, Finland, and presence in London, Boston and in Singapore. For more information, please visit www.bcplatforms.com or follow us on LinkedIn @BC Platforms.
About BC Platforms' Discovery and Research Platform
BCP's Discovery and Research Platform is a data and research management solution for clinical genomics studies. Genomic and phenotypic data is collected and stored on the platform, and users have access to data and tools through an application account. All common data types for NGS, GWAS, variant analysis, linkage, and other statistics can be managed on the platform. The Discovery and Research platform scales up from small candidate gene studies to large international collaboration environments. It supports the organisation of genomic and clinical projects to distinguish between studies and user groups. The platform also provides fine-grained access management and auditing tools for building quality certified processes.
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.
Contact information:
Tero Silvola
BC Platforms AG
tero.silvola@bcplatforms.com
Katja Stout
Scius Communications
katja@sciuscommunications.com
CureDuchenne (Media Contact)
Ranggin Hedayat
The Brand Amp
ranggin@thebrandamp.com
