Parent Project Muscular Dystrophy (PPMD) announced it is updating its global registry with a new, user-friendly app intended to empower people with Duchenne muscular dystrophy and their families to become more informed and engaged.
Created by Thread, a company that specializes in remote and decentralized patient research, the platform builds upon The Duchenne Registry, the largest patient-reported outcomes database for Duchenne.
Usable on both IOS and Android, the enhancements are designed to make registry navigation easier and more convenient. A web portal houses general registry information and a page for new registrants, although there is no need for re-registration. Patients and families will continue to have access to PPMD’s news and resources.
Information will be stored in the organization’s new Duchenne Outcomes Research Interchange, a virtual warehouse that will link registry data with electronic health records (EHR) data from multiple U.S. medical care centers and clinics. That will be added to input from academic and advocacy partners, as well as to post-marketing information from pharmaceutical collaborators.
“The Duchenne Registry has been an invaluable resource for this community since its inception over 12 years ago, thanks to the participation of thousands of families who keep their records up to date,” Ann Martin, director of the Duchenne Registry and a PPMD genetic counselor, said in a press release.
“The new registry app with its user-friendly interface, along with the creation of the Interchange, firmly places the Duchenne Registry at the center of the Duchenne data world,” she said.
Features of the new platform include easy electronic registration, data collection tools using an intuitive mobile interface, and notifications for when information is needed and to support clinical trial recruitment.
In addition to EHR data, the app soon will offer a real-time data visualization dashboard, plus the ability to connect and contribute data from wearable health devices.
More than 5,000 individuals in 115 countries have joined the registry since its launch in 2006, resulting in a dozen years of longitudinal data and more than 100 trials and studies. Formally known as DuchenneConnect, the PPMD-funded registry was established after discussions about the need for a new resource to serve the needs of the entire Duchenne community.
“The clinical trial pipeline has never been more robust,” Martin said. “With a new therapeutic landscape, the goal is to combine the powerful patient-reported outcomes data currently being collected through the Duchenne registry with clinician-reported data. Soon, [EHR] data will also be pulled into the Interchange — combining all of this data together in one centralized location, and benefiting our entire community.”
More information about the new platform may be obtained by emailing [email protected]
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