Leading Duchenne Organization Enhances 12-Year-Old Registry with New App, Empowering Families to Become Citizen Scientists by Contributing Data from the Palm of their Hand
HACKENSACK, N.J., Nov. 12, 2019 /PRNewswire/ -- Today, Parent Project Muscular Dystrophy (PPMD) , a nonprofit organization leading the fight to end Duchenne muscular dystrophy (Duchenne) , launched a new app version of The Duchenne Registry (the Registry), to enhance the patient engagement and resources already used by thousands of families internationally. This new platform builds on PPMD's 12-year-old Registry, the largest patient reported outcomes registry for Duchenne.
Updates to The Duchenne Registry platform are 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. Through the Duchenne Registry app, patients and families will still have access to PPMD's valuable patient education resources and news.
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
Ann Martin, Director of The Duchenne Registry and a genetic counselor for PPMD, says that these enhancements to the Registry represent a new era in data collection for rare disease: "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."
The new Registry platform and participant app was created by THREAD — a company specializing in remote and decentralized patient research via their technology platform and services. To learn more about PPMD's new Registry app, visit DuchenneRegistry.org.
About Parent Project Muscular Dystrophy
Duchenne is a fatal genetic disorder that slowly robs people of their muscle strength. Parent Project Muscular Dystrophy (PPMD) is the largest most comprehensive nonprofit organization in the United States focused on finding a cure for Duchenne muscular dystrophy—our mission is to end Duchenne. We invest deeply in treatments for this generation of people affected by Duchenne and in research that will benefit future generations. We advocate in Washington, DC, and have secured hundreds of millions of dollars in funding. We demand optimal care, and we strengthen, unite and educate the global Duchenne community. Everything we do—and everything we have done since our founding in 1994—helps people with Duchenne live longer, stronger lives. We will not rest until every person has a treatment to end Duchenne. Go to www.ParentProjectMD.org for more information or to learn how you can support our efforts and help families affected by Duchenne. Follow PPMD on Facebook , Twitter , and YouTube .
About The Duchenne Registry
The Duchenne Registry (formerly DuchenneConnect) began in 2007, when a group of thought leaders in the Duchenne and Becker muscular dystrophy community began discussing the need for a new kind of resource that would connect and serve the needs of the entire community. What they envisioned was a central hub that would bring together those living with Duchenne or Becker, along with their families and caregivers, to connect them with medical research, clinical care, clinical trials, and each other. At the same time, it would also be a resource for researchers and industries with an interest in Duchenne, allowing access to aggregate, de-identified data provided by patients and their families — information that could prove vital to advances in care and treatment. Today, the result of this endeavor is The Duchenne Registry, the largest, most comprehensive registry for Duchenne and Becker muscular dystrophy and female carriers.
Since 2011, The Duchenne Registry has been funded entirely by PPMD, and PPMD is the sole guardian of the Registry and its material. PPMD is deeply committed to the Registry to ensure that it is serving the needs of the entire Duchenne and Becker community.
To learn more about The Duchenne Registry, visit our website .
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SOURCE Parent Project Muscular Dystrophy