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Parent Project Muscular Dystrophy’s Duchenne Registry Participant Response Rate Increases Exponentially in 2020 utilizing THREAD

Year one of The Duchenne Registry powered by THREAD’s decentralized platform sees uptick in survey completion, data collection, and community engagement

CARY, N.C. – January 26, 2021–THREAD, an innovative technology and service provider that enables decentralized clinical research, and Parent Project Muscular Dystrophy (PPMD), a nonprofit organization leading the fight to end Duchenne muscular dystrophy (Duchenne), announced impressive results from year one of The Duchenne Registry Mobile App. 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,” said Ann Martin, senior vice president of community research and registry director at PPMD. “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.”

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.

“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. “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.”

PPMD’s innovative shift to more patient-centric, mobile-friendly engagement and data collection parallels the industrywide shift to remote clinical research that has grown over the past five years and significantly accelerated in 2020. THREAD drives innovation for this broader effort by supporting sponsors and clinical research organizations with decentralized study capabilities.

Click here for a full overview of the data collected through The Duchenne Registry Mobile App in 2020.


THREAD is a leading provider of a proprietary, decentralized research platform and suite of supporting services used by biopharma, CROs and life science organizations to remotely capture data from participants and sites during, in-between and in lieu of in-clinic visits. THREAD's platform and supporting services are helping customers to reduce study launch timelines, reduce study budgets with Virtual Visits and bring studies from the clinic to patients' homes. THREAD provides key platform features such as eConsent, eCOA/ePRO, sensors, reminders and telehealth Virtual Visits to support remote data capture, hybrid virtual studies and fully decentralized studies in key therapeutic areas. In 2019, THREAD was acquired by strategic health care investors Water Street Healthcare Partners and JLL Partners.

About Parent Project Muscular Dystrophy

Duchenne is a fatal genetic disorder that slowly robs people of their muscle strength. Parent Project Muscular Dystrophy (PPMD) fights every single battle necessary to end Duchenne.

We demand optimal care standards and ensure every family has access to expert healthcare providers, cutting edge treatments, and a community of support. We invest deeply in treatments for this generation of Duchenne patients and in research that will benefit future generations. Our advocacy efforts have secured hundreds of millions of dollars in funding and won four FDA approvals.

Everything we do—and everything we have done since our founding in 1994—helps those with Duchenne live longer, stronger lives. We will not rest until we end Duchenne for every single person affected by the disease. Join our fight against Duchenne at EndDuchenne.org. Follow PPMD on Facebook, Twitter, Instagram, 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 the website.


Media Contact:

Terri Pollock

Amendola Communications (for THREAD)