PPMD is excited to announce our new partnership with THREAD — a company specializing in remote/virtual patient research via their platform — to enhance the patient engagement and care management tools for The Duchenne Registry. Building on PPMD’s 10-year-old Duchenne Registry, the largest Patient Reported Outcomes Registry for Duchenne, the new platform is scheduled for 2019 launch.

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 (useable on both iOS and Android), with a web portal to help patients determine registry eligibility. Through the Duchenne Registry app, patients and families will still have robust access to PPMD’s valuable patient education information and news.

“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” said Ann Martin, Director of The Duchenne Registry.

THREAD is a proven leader in remote patient research enabling groundbreaking studies with industry partners, contract research organizations (or CROs), academic researchers, and non-profits. Examples of studies on the THREAD platform include FocalView with Novartis, The PRIDE Study with UCSF, and EpiWatch with Johns Hopkins Medicine.

“THREAD is proud to partner with PPMD to help move Duchenne research forward. 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, Chief Product Officer at THREAD.

PPMD’s Founding President and CEO, Pat Furlong, says the organization wanted to develop a tool that was easy and useful to families who are already busy: “Our goal is to advance drug development 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.”

The new platform will include key features such as:

• Data collection tools to capture patient reported outcomes and surveys with an easy-to-use mobile interface
• App notifications to support clinical trial recruitment, and remind patients and caregivers when important registry information is needed,
• Data integration of patient reported outcomes and clinician reported outcome data from electronic health records (EHRs)
• Ability to connect and contribute data from wearable health devices
• Real-time data visualization dashboard

Earlier this fall, on World Duchenne Awareness Day, PPMD announced plans to launch The Duchenne Outcomes Research Interchange (the Interchange) in 2019. Sarepta Therapeutics, through its focus on EXONDYS 51 post-approval data collection, will provide the first study data set as the inaugural partner. The Interchange will aggregate patient entered data from The Duchenne Registry and clinician entered data (e.g. post-marketing study data and/or electronic health records), to provide critical information to clinicians, sponsors, payers, regulators, and the patients/families who participate in PPMD’s Duchenne Registry.

Join The Duchenne Registry

If you aren’t a part of the Registry or haven’t updated your profile recently, do it today!