Comprehensive Real-World Data will Enhance CureDuchenne Link® as a Unique Resource to Accelerate Research Toward a Cure for Duchenne Muscular Dystrophy
Newport Beach and San Francisco, Calif. – April 11, 2023—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 that 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 to 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.
About CureDuchenne
Twenty years ago, CureDuchenne was created with one goal: to find and fund a cure for Duchenne muscular dystrophy, the leading genetic killer of young boys. Today, CureDuchenne is recognized as a global leader in research, patient care, and innovation for improving and extending the lives of those with Duchenne. CureDuchenne’s innovative venture philanthropy model has advanced transformative treatments for Duchenne muscular dystrophy, including 17 projects that advanced to human clinical trials and multiple projects to overcome the limitations of exon-skipping and gene therapy. In addition, CureDuchenne contributed early funding to the first FDA-approved Duchenne drug, pioneered the first and only Duchenne physical and occupational therapist certification program and created an innovative biobank and data registry, accelerating research toward a cure. For more information on how to help raise awareness and funds needed for research, please visit cureduchenne.org.
About PicnicHealth
PicnicHealth is a healthcare technology company that partners directly with patients to build deep real-world datasets. The company leverages state-of-the-art machine learning, combined with human curation, to port complete medical records into an easy-to-use online application. The platform gives patients unprecedented access to and control over their medical records and, with their consent, the opportunity to contribute this valuable data to further scientific research. Founded in 2014 by Noga Leviner and Troy Astorino, the company partners with dozens of the world’s largest biopharma companies and academic research institutions. Learn more at PicnicHealth.com and picnichealth.com/research-platform.
Source: https://cureduchenne.org/press-release/link_picnic/