CureDuchenne, a worldwide non-profit organization dedicated to discovering and financing a remedy for Duchenne muscular dystrophy, has recently announced a partnership with PicnicHealth, a health technology company that prioritizes patient-centered care. This partnership aims to enhance CureDuchenne Link‘s ability to generate real-world evidence by utilizing the PicnicHealth platform.
Duchenne muscular dystrophy is a rare and fatal genetic disease that affects approximately 1 in every 5,000 males. The disease causes progressive muscle weakness, ultimately leading to the loss of mobility, respiratory and cardiac failure, and a shortened life span.
Both organizations aim to speed up research on Duchenne and Becker muscular dystrophy by developing and utilizing real-world evidence obtained from patients affected by these debilitating illnesses. This effort will lead to the development of transformative treatments for these diseases.
Additionally, as part of the initiative, a comprehensive online portal will be provided to individuals who suffer from intricate medical conditions, allowing them to conveniently access their medical records and simplify the management of their healthcare.
The CureDuchenne Link is a biobank that integrates data and makes it easier to collect biosamples from people who have been diagnosed with Duchenne and Becker muscular dystrophy or who carry the genes for either disease. This information is combined with data provided by the participants themselves to create a comprehensive resource that researchers can use to work towards finding a cure for these conditions.
Scientists are able to monitor the ongoing effects of Duchenne and Becker muscular dystrophy on an individual by gathering and tracking their data and biosamples consistently over a period of time. Furthermore, researchers can now examine both retrospective and prospective data by accessing the complete medical history of those who participate in the PicnicHealth platform.
“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.”
Individuals who participate in CureDuchenne Link and agree to have their medical records collected will receive free access to the PicnicHealth patient portal. This portal provides a user-friendly, browser-based interface for conveniently accessing all of their medical records. By streamlining the process, the arduous medical journey that patients with Duchenne or Becker muscular dystrophy face, which typically involves numerous specialists, medications, and lab tests, can be made less complicated.
“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.”
Enrollment in CureDuchenne Link is both free and voluntary, just like the submission of medical records data through PicnicHealth.