New App Plays ‘Pivotal’ Role in Increasing Registry Successes

New App Plays ‘Pivotal’ Role in Increasing Registry Successes
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In the first year since Parent Project Muscular Dystrophy (PPMD) and Thread launched a mobile app aimed at making participation easier, engagement in the Duchenne Registry — a newly revamped, 12-year-old network of patient-powered data — increased more rapidly than ever before, the non-profit reported.

From November 2019 to November 2020, 424 people from 56 countries joined the registry, and the number of surveys completed on its website — more than 7,000 — was almost double that of previous years.

In addition, the registry was used to recruit patients into 12 clinical trials.

The goal of the new app was to make it easier for people with DMD to engage with the registry — and it’s clearly worked, PPMD said in an overview detailing the data acquired in the first year of using the app.

“The app has played a pivotal role in PPMD’s efforts to increase community engagement, encourage citizen scientists, and advance Duchenne research,” Ann Martin, senior vice president of community research and registry director at PPMD, said in a press release.

PPMD launched the app in November 2019 as a way to encourage people with Duchenne muscular dystrophy and their families to contribute to patient-led research and to expand the Duchenne Registry. The registry is the largest patient-reported outcomes database for the disorder.

From a total of more than 5,500 people in the register, 1,086 actively provide data. Of these, 39% (424) are new registrants and 61% transitioned from the previous web platform.

Although the number of new registrants through November 2020 is similar to the annual average of past years (400), the number of surveys completed rose significantly, to 7,039. By comparison, 5,103 new surveys were completed between August 2018 and August 2019. That’s a big jump from the 3,711 surveys completed from May 2015 to May 2016.

PPMD attributes this rise to the ease of using the app.

“Literally having the app in the palm of your hand makes completing surveys and updating your information easier than ever before!” the organization tells its users in the report.

While the majority of registrants who submitted the “about me” survey through the app have Duchenne (73%), others reported a diagnosis of Becker muscular dystrophy; some reported being either confirmed or manifesting carriers.

Nearly three-quarters of the new registrants (71%) live in the U.S., with 3% each from Canada and Australia and 4% from the U.K. The remaining 19% hail from 52 other countries.

PPMD is collaborating with Thread to boost the accuracy and frequency of data collection to better help researchers investigating possible treatments.

Registry data, in fact, already contributes to scientific research, with PPMD having received seven data requests from various researchers over the course of 2020. Only de-identified data is shared, meaning that personal information such as names, birthdates, and email addresses have all been removed.

The mobile-friendly and patient-centric shift in patient engagement and data collection seen in the Duchenne Registry effort reflects a wider shift toward remote research. While this trend predates the global COVID-19 pandemic, efforts to make more research doable in remote settings accelerated over 2020.

“These first-year results reflect our success in supporting participants, caregivers and researchers with a decentralized research experience to enable better study outcomes,” said John Reites, president of Thread.

For its part, the PPMD is thrilled that the changes to its platform and the new app have led to greater involvement.

“We are blown away by the results we saw just in the first year, and we can’t wait to see our continued progress in 2021,” Martin said.

Forest Ray received his PhD in systems biology from Columbia University, where he developed tools to match drug side effects to other diseases. He has since worked as a journalist and science writer, covering topics from rare diseases to the intersection between environmental science and social justice. He currently lives in Long Beach, California.
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José is a science news writer with a PhD in Neuroscience from Universidade of Porto, in Portugal. He has also studied Biochemistry at Universidade do Porto and was a postdoctoral associate at Weill Cornell Medicine, in New York, and at The University of Western Ontario in London, Ontario, Canada. His work has ranged from the association of central cardiovascular and pain control to the neurobiological basis of hypertension, and the molecular pathways driving Alzheimer’s disease.
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Forest Ray received his PhD in systems biology from Columbia University, where he developed tools to match drug side effects to other diseases. He has since worked as a journalist and science writer, covering topics from rare diseases to the intersection between environmental science and social justice. He currently lives in Long Beach, California.
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