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The first patient-led, patient-centered research registry for joint, bone, and inflammatory skin conditions enrolls 11,000 patients.
ArthritisPower™, the first-ever patient-led, patient-centered research registry for joint, bone, and inflammatory skin conditions, successfully completed enrolling 11,000 patients who have arthritis, announced CreakyJoints®, a patient resource.
Doing so fulfilled 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 a completely refreshed and advanced version of ArthritisPower was launched in March 2017, more than 8500 patients joined the community and have already logged more than 80,000 patient reported outcome measures.
ArthritisPower is part of PCORnet, the National Patient-Centered Clinical Research Network, developed with support from 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.
CreakyJoints, now in its 18th year, is the go-to source for more than 100,000 patients with arthritis and their families worldwide who are seeking education, support, advocacy, and patient-centered research.
Having a diverse, large, and engaged patient population within ArthritisPower enhances researchers’ ability to study and better understand the arthritis community, it was noted. Researchers from elite universities and research organizations nationwide, such as Johns Hopkins University, Duke University, Yale University, and the University of Alabama at Birmingham, access the ArthritisPower research registry to inform their studies.
Resulting data are anonymized and focus on the patient experience of arthritis to better understand patient preferences related to disease management as well as with traditional and complementary therapies. Data derived from ArthritisPower have been presented at major medical meetings, such as those of the American College of Rheumatology and the European League Against Rheumatism, and are 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,” he stated. “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.”
When patients 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.
Patients are simultaneously completing verified self-assessments, such as the RAPID3, and others related to sleep, physical function, and pain. As they enter their patient reported outcomes, they can track results over varying durations 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,” Ginsberg said. “There are millions of Americans living with arthritis whom we invite to join us.”
He added, “Every person who enters the registry helps us understand arthritis better and discover novel treatments and management strategies,”