CreakyJoints® recently announced that ArthritisPower™, the first ever patient-led, patient-centered research registry for joint, bone, and inflammatory skin conditions successfully completed enrolling 11,000 arthritis patients, fulfilling one of its primary contract requirements with the Patient-Centered Outcomes Research Institute (PCORI) more than 12 months ahead of schedule. ArthritisPower is a free science-based, privacy-protected web and mobile app for iPhone and Android devices that allows patients to track their symptoms and treatments while simultaneously participating in arthritis research. Since launching a completely refreshed and advanced version of ArthritisPower in March 2017, over 8,500 patients joined the community and have already logged more than 80,000 patient reported outcome measures. ArthritisPower (AR-PoWER) is a patient powered research network (PPRN) that is part of PCORnet, the National Patient-Centered Clinical Research Network, developed with support from the Patient-Centered Outcomes Research Institute (PCORI), a nonprofit, nongovernmental organization authorized by Congress in 2010. Its overall goal is to support clinical research that will enhance informed health care decision making and improve health care delivery.
University Partners Enhance Understanding
Having a diverse, large, and engaged patient population within ArthritisPower enhances researchers’ ability to study and better understand the arthritis community. Researchers from elite universities and research organizations nationwide, such as Johns Hopkins University, Duke University, Yale University, University of Alabama at Birmingham, and others, access the ArthritisPower research registry to inform their studies.
We are absolutely delighted that ArthritisPower is being actively used by thousands of arthritis patients (like me) who personally benefit from tracking and directly sharing their disease experience with their loved ones and their healthcare providers.
Seth Ginsberg – President and Co-Founder of CreakyJoints and Principal Investigator of ArthritisPower
Resulting data (past and forthcoming) is anonymized and focuses on the patient experience of arthritis to better understand patient preferences related to disease management as well as with traditional and complementary therapies. Already, data derived from ArthritisPower has been presented at major medical meetings such as the American College of Rheumatology and the European League Against Rheumatism, and is slated for future peer-reviewed publications.
“We are absolutely delighted that ArthritisPower is being actively used by thousands of arthritis patients (like me) who personally benefit from tracking and directly sharing their disease experience with their loved ones and their healthcare providers,” said Seth Ginsberg, president and co-founder of CreakyJoints and a principal investigator of ArthritisPower. “We’re also proud that we’ve developed a highly useful tool for researchers who expand our understanding of arthritis while protecting patient identity. But we won’t rest on our laurels. In the future, ArthritisPower will be integrated with other research registries, laboratory tests, and electronic health records so that we can build a truly interactive system for studying arthritis and related conditions.”
Easy Access to Research and Tracking
When people with arthritis sign up for ArthritisPower, they provide informed consent, which allows the app to offer information about a variety of clinical trial and other research opportunities. Patients can proactively decide when and how to participate in studies.
In addition to participating in studies, simultaneously, patients are completing verified self-assessments of their arthritis related symptoms as well as others related to sleep, physical function and pain. As they enter their patient reported outcomes, they can track results over varying durations of time and overlay their usage of medications to see when a new treatment impacts their symptoms. Their personal data can be directly emailed to their provider in advance of an appointment to encourage data driven conversations about treatment and management strategies.
“We’re not done enrolling ArthritisPower. There are millions of Americans living with arthritis whom we invite to join us. Every person who enters the registry helps us understand arthritis better and discover novel treatments and management strategies,” added Mr. Ginsberg.
CreakyJoints®, now in its 18th year, is the go-to source for more than 100,000 arthritis patients and their families world-wide who are seeking education, support, advocacy and patient-centered research. Co-founded in 1999 by arthritis patient Seth Ginsberg and social entrepreneur Louis Tharp, CreakyJoints is part of the Global Healthy Living Foundation, whose mission is to improve the quality of life for people with chronic illness. For more information and to become a member (for free), visit CreakyJoints.org. To learn more about ArthritisPower visit ArthritisPower.org.
PCORnet, the National Patient-Centered Clinical Research Network, is an innovative initiative of the Patient-Centered Outcomes Research Institute (PCORI). The goal of PCORnet is to improve the nation’s capacity to conduct clinical research by creating a large, highly representative network that directly involves patients in the development and execution of research. More information is available at www.pcornet.org.
The Patient-Centered Outcomes Research Institute (PCORI) is an independent, nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continually seeking input from a broad range of stakeholders to guide its work. More information is available at www.pcori.org