UPPER NYACK, N.Y.--(BUSINESS WIRE)--CreakyJoints®, 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, today announces that ArthritisPower™, the first ever patient-led, patient-centered research registry for joint, bone, and inflammatory skin conditions is available as a free mobile app for iPhone and Android devices. The completely refreshed ArthritisPower application allows patients to track their symptoms and treatments while simultaneously participating in arthritis research. Notable enhanced features of ArthritisPower include:
- Symptoms tracking: ArthritisPower allows patients to track their symptoms and treatments, and share that information with their health care providers via email.
- Advanced reporting: Participants can track results over varying durations of time and overlay their usage of medications to see when a new treatment began impacting their symptoms.
- Symptoms journal: Patients can record personal insights, giving context to their flares or improvements.
- Messaging: Patients can initiate private message circles to communicate directly with other users as well as external health care providers, patients and caregivers.
- Social sharing: Users can choose to share their results and health milestones with loved ones via social media and email.
- Research consent: Specific to its funded mission, ArthritisPower asks participants to securely donate their health information to support arthritis research conducted by universities, research facilities, and physicians. Users will be notified about additional research opportunities in app.
“Working with the University of Alabama at Birmingham (UAB) and PCORnet, we developed a unique, convenient and easy-to-understand application that will help patients become more active in understanding their own health while supporting the arthritis community around the world. In the past, we were studied as subjects. With ArthritisPower, we can be studied as people,” said Seth Ginsberg, President and Co-Founder of CreakyJoints and the Global Healthy Living Foundation (GHLF). “ArthritisPower enables patients to drive research priorities, while also giving them a tool to proactively manage and track their own disease.”
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 health care decision making and improve health care delivery.
ArthritisPower Research Answers Big Question
Patients with rheumatoid or psoriatic arthritis or similar chronic conditions usually learn about opportunities to participate in research from their health care providers. ArthritisPower will offer information about a variety of clinical trial and other research opportunities, allowing patients to proactively decide when and how to participate.
Launched as a beta version in 2015, ArthritisPower has already generated meaningful data sets about arthritis patient preferences, which have been presented at the 2015 ACR/AHRP Annual Meeting in San Francisco, the Annual European Congress of Rheumatology (EULAR 2016) in London and the 2016 ACR/AHRP Annual Meeting in Washington, D.C. Thousands of ArthritisPower participants donated their data and participated in research studies in app in order to inform studies led by CreakyJoints and research partners such as UAB, Johns Hopkins University, Yale University, and others.
“The ArthritisPower registry is part of the interconnected national PCORnet collaboration of patient groups, registries and health systems. 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,” says Jeffrey Curtis, MD, MS, MPH, William J. Koopman Endowed Professor in Rheumatology and Immunology at the University of Alabama at Birmingham (UAB), Division of Clinical Immunology and Rheumatology.
“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. The more people who join and share information about their symptoms and treatments, the more quickly we are able to find answers,” he said.
Created by CreakyJoints in collaboration with the University of Alabama at Birmingham, and supported by a multi-year, multi-million dollar investment by the Patient-Centered Outcomes Research Institute (PCORI), ArthritisPower is the first ever patient-led, patient-centered research registry for joint, bone, and inflammatory skin conditions. The free ArthritisPower mobile and desktop application allows patients to track and share their symptoms and treatments while simultaneously participating in research via informed consent. ArthritisPower Patient Governors serve as gatekeepers for researchers seeking to access registry data or solicit the community to participate in unique, voluntary studies. To learn more and join ArthritisPower, visit www.ArthritisPower.org.
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 www.CreakyJoints.org.