Parent Project Muscular Dystrophy (PPMD) has launched a new app version of The Duchenne Registry (the Registry) to enhance the patient engagement and resources used by families of those with the disease.
Created by THREAD, the new platform builds on PPMD’s 12-year-old Registry and is aimed at making it easier to navigate, more engaging for patients and families, and more convenient to access. The new interface will be primarily mobile app based (usable on both iOS and Android), with a web portal housing general Registry information and a pre-registration page for new registrants.
Data collected from the new app will then be stored in PPMD’s Duchenne Outcomes Research Interchange (the Interchange), a data warehouse that will combine data from The Duchenne Registry with EHR data from several hospitals and clinics in the United States, post marketing surveillance data provided by industry partners with approved therapies, and eventually data sets contributed by academic and other advocacy partners
The new platform will include key features such as:
- A simple registration and consent process including an e-signature
- Data collection tools to capture patient reported outcomes and surveys with an easy-to-use mobile interface
- App notifications to remind patients and caregivers when important registry information is needed and to support clinical trial recruitment
- Data integration in the Duchenne Outcomes Research Interchange, where data will eventually be combined with clinician reported data from electronic health records (EHRs) and other key data sets contributed by Interchange partners
- Ability to connect and contribute data from wearable health devices in the near future
These enhancements to the Registry represent a new era in data collection for rare disease, according to Ann Martin, director of The Duchenne Registry and a genetic counselor for PPMD, in the release.
“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. 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.
“The clinical trial pipeline has never been more robust. 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 electronic health record data (EHR) will also be pulled into the Interchange, combining all of this data together in one centralized location, and benefiting our entire community.”
[Source(s): Parent Project Muscular Dystrophy, PR Newswire]