Today we are proud to announce that over 11,500 patients have enrolled in ArthritisPower, our patient-led, patient-centered research registry for joint, bone, and inflammatory skin conditions.
We built ArthritisPower two years ago with one goal: Amplify the voice of people living with all forms of arthritis. PCORI, the Patient-Centered Outcomes Research Institute, believed in our vision and provided a grant to help recruit our first 11,000 members by September of 2018. We’re excited to have hit this key milestone an entire year ahead of schedule. It’s a signal that people living with arthritis are eager to share their experiences and contribute to research.
Our registry’s core feature is our app, available for iOS and Android devices, that allows patients to track their symptoms and treatments while simultaneously participating in arthritis research.
Since CreakyJoints launched a completely refreshed and advanced version of ArthritisPower in March 2017, over 8,500 patients joined our research community and have already logged more than 50,000 patient reported outcome measures.
ArthritisPower 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 healthcare decision making and improve health care delivery.
Why 11,500 ArthritisPower Members Matter
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.
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, we’ve presented data derived from ArthritisPower at major medical meetings such as the American College of Rheumatology and the European Congress of Rheumatology with peer-reviewed publications slated for the future.
“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.”
ArthritisPower Provides Patients Easy Access to Research and Tracking
When people join ArthritisPower, they become part of a secure database of patients who want to contribute to research. ArthritisPower members are notified via email and the app when a study is available that they’re eligible for.
In addition to participating in studies, simultaneously, patients can complete verified self-assessments, such as the RAPID3 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,” said Seth. “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.”
ArthritisPower is for people living with all forms of arthritis, including: rheumatoid arthritis, ankylosing spondylitis, psoriatic arthritis, psoriasis, osteoporosis/osteopenia/low bone mineral density, osteoarthritis (degenerative arthritis), fibromyalgia, gout, juvenile idiopathic arthritis, inflammatory bowel disease (e.g. Crohn’s disease, ulcerative colitis), lupus, scleroderma (systemic sclerosis), polymyositis, and dermatomyositis.