New Tool to Help With Virtual Research and Care Management for Duchenne Patients

To improve patient engagement and care management tools for the Duchenne Registry, Parent Project Muscular Dystrophy (PPMD) has teamed up with THREAD, a company specializing in remote and virtual patient research.

Enhancements to the registry — available on both IOS and Android devices — will be mainly mobile app-based, with a web portal to help determine patient eligibility. The registry app will continue to provide patients and caregivers with patient education information and developments.

“The THREAD platform will enable new, innovative patient engagement tools for the Duchenne Registry, allowing for an innovative kind of virtual research and care management solution,” Ann Martin, Duchenne Registry director, said in a press release.

The platform will be launched sometime this year. It will include features such as user-friendly data collection tools to garner patient-reported outcomes; app notifications to support clinical trial recruitment and remind patients and caregivers when key registry information is needed; data integration of patient-reported outcomes, with clinician-reported outcome data from electronic health records; the ability to connect and contribute via wearable health devices; and real-time data visualization dashboards.

THREAD’s remote patient research platform has been used to conduct studies with industry collaborators, contract research organizations, academic investigators, and nonprofit organizations.

“PPMD is focused on creating a network of citizen scientists by providing innovative ways for patients and caregivers to become directly involved in research,” said John Reites, THREAD’s chief product officer.

The Muscular Atrophy News forums are a place to connect with other patients, share tips and talk about the latest research. Check them out today!

Pat Furlong, PPMD’s founding president and CEO, said the overarching goal is to further the development of therapies through patient-centered research.

“Given how busy patients and caregivers are in their daily lives, we believe this new platform will better enable our community to participate in research and contribute data much more easily over time,” she said.

The 10-year-old Duchenne Registry is the largest patient-reported outcome registry for Duchenne muscular dystrophy, a genetic disorder characterized by progressive muscle degeneration and weakness. It was established as a resource to connect those living with the disease, along with their families and caregivers, to medical research, clinical care, clinical trials, and each other.

Plans have already been announced to launch the Duchenne Outcomes Research Interchange this year. The effort will combine data from the Duchenne Registry with clinician-reported, post-marketing surveillance data provided by industry partners with approved therapies. It will pull together various patient and clinician-entered data to provide essential information to clinicians, sponsors, insurance companies, regulators, and Duchenne Registry patients and families.

PPMD is a nonprofit organization with the mission of ending Duchenne.