CreakyJoints, an advocacy group for persons with arthritis, has launched ArthritisPower, a patient research registry for those with joint, bone and inflammatory skin conditions.
The registry is available via a free mobile app for iPhone and Android devices. The organization is financially supported by industry, government and private foundations, says Seth Ginsberg, president of CreakyJoints and co-founder of the Global Healthy Living Foundation.
Significant support also came from the Patient-Centered Outcomes Research Institute, a not-for-profit nongovernmental organization authorized and funded in the Affordable Care Act. CreakyJoints also is part of PCORnet, the National Patient-Centered Clinical Research Network.
“The ArthritisPower registry is part of the interconnected PCORnet collaboration of patient groups, registries and health systems,” Jeffrey Curtis, MD, a professor of rheumatology and immunology at the University of Alabama at Birmingham, said in a statement. “That means that as ArthritisPower grows, researchers can access specific data from our network and connect that information with data from other PCORnet networks, so that larger health questions can be asked and information can be utilized across patient populations.
“We’re entering an era where patients speak up about what they want researchers to investigate, and researchers can use big data to answer those questions,” Curtis continued. “The more people who join and share information about their symptoms and treatments, the more quickly we are able to find answers.”
ArthritisPower launched as a beta site in 2015 with 2,500 individuals downloading the mobile app and providing feedback on features. These early adopters provided 250 suggestions that were incorporated into the second version, built in partnership with the University of Alabama at Birmingham and now widely available.
CreakyJoints has been offering content online for two decades, serving more than 100,000 members—its web site has about 1 million visitors a year, Ginsberg notes. Now in the mobile era, it is offering additional services, enabling patients to track symptoms and treatments while also participating in research trials.
Patients can share information with their physicians, track results over time to determine when a new treatment starts to affect their symptoms, record personal insights in a journal to give context to flare-ups or improvements, send secure messages in private circles to communicate with others, and donate their health information to support research if they wish, Ginsberg explains.
Now, CreakyJoints is exploring how to scale the arthritis platform to also support research on how patients with diabetes or other autoimmune diseases are handling their conditions.
Further, Ginsberg says, the effort wants to expand to support other diseases. “We want to get it right,” he adds. “We expect 10,000 users in a year, and then start looking at results and what’s new.”
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