Meet the Patient Leaders Behind GHLF’s COVID-19 Patient Support Program
Our research team engages in patient-centered research to better understand rheumatic and musculoskeletal conditions from the patient perspective. We conduct studies on topics that patients are interested in, such as treatment decision-making, barriers to care, symptom management, and alternative treatments.
We frequently collaborate on patient-centered outcomes research projects with leading clinical researchers at schools of medicine around the country: the University of Alabama at Birmingham, Yale University, the University of Utah, the University of Pennsylvania, and more. We present our research findings at medical conferences and publish in peer-reviewed journals, so that health care professionals around the world can benefit from our members’ insights. We also make it a priority to share research findings back with our community so that patients can benefit from what we’ve learned.
Prior to conducting any research project, we meet with our ArthritisPower Patient Governor Group (PGG) to shape research questions, study aims, and methods. Patient Governors use their own experiences as patients and researchers to improve research projects and ensure that they are patient-centered. Patient Governors also suggest topics that are of particular interest to people with rheumatic and musculoskeletal conditions to help us develop research that best serves the patient community.
Our research is completely voluntary and always free to participate in. Participant responses are kept confidential and only used for the purposes of the research study. Any data presented from our research is shown in aggregate form, so that individual responses are not identifiable.
Research is conducted via our ArthritisPower research registry, which was established in 2015 and created in collaboration with the University of Alabama at Birmingham (UAB), with infrastructure support from the Patient-Centered Outcomes Research Institute (PCORI).
Created by CreakyJoints®, ArthritisPower® is the first-ever patient-centered research registry for joint, bone, and inflammatory skin conditions, as well as arthritis and rheumatological manifestations of gastrointestinal-tract (GI) conditions. With tens of thousands of consented arthritis patients, the free ArthritisPower mobile and desktop application allows patients to track their disease and participate in voluntary research studies in a secure and accessible manner. Results from ArthritisPower studies are frequently published in peer-reviewed journals and presented at medical meetings in the United States and around the world. ArthritisPower Patient Governors serve as gatekeepers for researchers who seek to access registry data or solicit the community to participate in unique, voluntary studies. To learn more and join ArthritisPower, visit ArthritisPower.org.