THREAD is a technology and service provider that enables decentralized clinical research, and Parent Project Muscular Dystrophy (PPMD) is a nonprofit organization leading the fight to end Duchenne muscular dystrophy (Duchenne).
Results from 2020
The mobile app, which is supported by THREAD’s decentralized platform with capabilities such as eConsent, eCOA, surveys and decentralized research tools, has empowered the patient advocacy organization to:
- Gather nearly 50% more surveys in 2020 than in previous years of the Registry
- Collect additional Registry data from more than 1,000 registrants across the globe
- Boost the total number of registrants since the Registry’s inception in 2007 to more than 5,500
- Recruit participants for twelve clinical trials
“The app has played a pivotal role in PPMD’s efforts to increase community engagement, encourage citizen scientists, and advance Duchenne research. THREAD’s technology and partnership has allowed us to make the Registry more accessible and intuitive for everyone – including patients, caregivers, and researchers. 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.”
— Ann Martin, senior vice president of community research and registry director at PPMD
This mobile app builds on PPMD’s 13-year-old Registry, the largest patient reported outcomes registry for Duchenne. PPMD is working with THREAD to enhance the frequency and accuracy of data collection to provide researchers and partners in therapy development with a more robust dataset as they seek treatments for this rare genetic disorder. By giving caregivers and patients living with Duchenne a convenient tool for contributing data and engaging in patient-led research, PPMD easily empowers citizen scientists in the Duchenne community, the release explains.
“These first-year results reflect our success in supporting participants, caregivers and researchers with a decentralized research experience to enable better study outcomes. The Duchenne Registry Mobile App is helping gather more consistent, quality data for researchers while being widely embraced by parents and children living with Duchenne. This is more evidence that illustrates the power of decentralized research study approaches.”
— John Reites, president of THREAD
PPMD’s innovative shift to more patient-centric, mobile-friendly engagement and data collection parallels the industry-wide shift to remote clinical research that has grown over the past 5 years and significantly accelerated in 2020. THREAD drives innovation for this broader effort by supporting sponsors and clinical research organizations with decentralized study capabilities.
To read a full overview of the data collected through The Duchenne Registry Mobile App in 2020, visit Parent Project Muscular Dystrophy.
[Source(s): THREAD, PR Newswire]
Duchenne Organization Builds on Registry with New App