Comprehensive Real-World Data will Enhance CureDuchenne Link® as a Unique Resource to Accelerate Research Toward a Cure for Duchenne Muscular Dystrophy
CureDuchenne, a global nonprofit committed to finding and funding a cure for Duchenne muscular dystrophy, and PicnicHealth, a patient-centered health technology company, today announced a partnership which leverages the PicnicHealth platform to bolster the real-world evidence-generation capabilities of CureDuchenne Link. Together, both organizations hope the development and deployment of real-world evidence from Duchenne and Becker muscular dystrophy patients will help accelerate research toward transformative treatments for these devastating diseases. The initiative will also offer a comprehensive portal for individuals living with these complex medical conditions to access their medical records, streamlining the process of managing their care.
CureDuchenne Link is a data-integrated biobank that facilitates the ongoing collection of biosamples from individuals diagnosed with Duchenne and Becker muscular dystrophy and carriers of either disease along with participant-recorded data to create one accessible resource for researchers working toward a cure for these diseases. This continuous collection of data and biosamples allows scientists to follow an individual’s data across a single timeline, seeing the ongoing impact of Duchenne and Becker muscular dystrophy. Now, researchers will also have access to the full medical history of those who opt into the PicnicHealth platform, allowing them to analyze retrospective and prospective data.
“Our unique partnership with PicnicHealth solves two problems – providing as much data to researchers as possible so they can advance their research toward a cure for this devastating disease, and helping families living with Duchenne and Becker muscular dystrophy navigate a very complex medical system. We will now be able to match the biosamples, genomic data, and patient-reported outcomes data we collect with real-world data to more fully understand the journey of those in the muscular dystrophy community,” said CureDuchenne founder and chief executive officer Debra Miller. “Researchers will finally gain access to a unique biobank and data set which will have tremendous value in their research.”
CureDuchenne Link participants who consent to the collection of their medical records will gain free access to the PicnicHealth patient portal, where they will be able to access all of their medical records in a convenient, easy-to-use, browser-based interface. This streamlines what can be a very complicated medical journey for patients with a disease as complex as Duchenne or Becker muscular dystrophy, with multiple specialists, medications, and lab tests.
“PicnicHealth was founded to help patients with chronic, complex diseases gain access to and control over their medical records and the opportunity to contribute to scientific research,” said PicnicHealth founder and chief executive officer Noga Leviner. “Our partnership with CureDuchenne will give members of the muscular dystrophy community the peace of mind that they can easily access and share their complete medical record with their entire care team while helping advance research to facilitate the next generation of therapies for muscular dystrophy.”
Participation in CureDuchenne Link is free and voluntary, as is contributing medical records data through PicnicHealth. For more information about how to enroll in CureDuchenne Link, visit www.cureduchennelink.org.
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