HACKENSACK, N.J., Dec. 13, 2018 /PRNewswire/ -- Parent Project Muscular Dystrophy (PPMD), a nonprofit organization leading the fight to end Duchenne muscular dystrophy (Duchenne), today announced a partnership with THREAD, a company specializing in remote/virtual patient research via their platform, to enhance the patient engagement and care management tools for their existing Duchenne Registry.
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 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 dashboards
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.
About Parent Project Muscular Dystrophy
Duchenne is a fatal genetic disorder that slowly robs people of their muscle strength. Parent Project Muscular Dystrophy (PPMD) is the largest most comprehensive nonprofit organization in the United States focused on finding a cure for Duchenne muscular dystrophy—our mission is to end Duchenne.
We invest deeply in treatments for this generation of people affected by Duchenne and in research that will benefit future generations. We advocate in Washington, DC, and have secured hundreds of millions of dollars in funding. We demand optimal care, and we strengthen, unite and educate the global Duchenne community.
Everything we do—and everything we have done since our founding in 1994—helps people with Duchenne live longer, stronger lives. We will not rest until every person has a treatment to end Duchenne. Go to www.ParentProjectMD.org for more information or to learn how you can support our efforts and help families affected by Duchenne. Follow PPMD on Facebook, Twitter, and YouTube.
From ePRO to Virtual Trials and everything in between, THREAD is a full-featured, proprietary platform enabling biopharma, CROs, nonprofit and academic researchers to capture data from patients in between or in lieu of clinic visits. THREAD provides the features researchers need to design, launch and provide proper oversight of remotely captured data with patients and sites including; eConsent, ePRO, eDROs, medical devices, surveys, notifications, telehealth and more.
For more information about THREAD, visit THREADresearch.com.
SOURCE Parent Project Muscular Dystrophy