As an arthritis patient, you can make a difference in the fight against arthritis and related conditions with this free app.
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CreakyJoints has teamed up with rheumatology researchers at the University of Alabama at Birmingham to launch ArthritisPower, a non-profit, patient-inspired and patient-managed research initiative.
Consider joining today. Transform your story into powerful clues that will help researchers develop better treatments and, ultimately, a cure.
For all devices
Track your symptoms and view results wherever it’s convenient for you. ArthritisPower is available for multiple devices and platforms —from desktop to smartphone to tablet.
Meet the people behind ArthritisPower
In 2014, CreakyJoints created a Patient-Powered Research Network called ArthritisPower® in partnership with the University of Alabama at Birmingham. ArthritisPower is part of the interconnected National Patient-Centered Clinical Research Network (PCORnet), a collaboration of patient groups, registries and health systems.
Patient Governor Group for ArthritisPower, the Patient-Powered Research Network
This innovative, nationwide research network of patients with rheumatoid arthritis, spondyloarthritis (e.g., psoriatic arthritis, ankylosing spondylitis), and other conditions is led by a Patient Governor Group with input from the wider CreakyJoints community, putting patients at the center of all research conducted with ArthritisPower.
“Patient Governors are the critical connection between research scientists and the CreakyJoints community of people living with arthritis. They tell us what issues are important to study from their perspective. They speak from their own experience to flag potential challenges so we can adjust when preparing to do research.”
– Ben Nowell, PhD, Director, Patient-Centered Research at CreakyJoints
ArthritisPower Patient Governor Group
Ben Nowell, PhD,
W. Benjamin Nowell, PhD, MSW, is Director, Patient-Centered Research, at the Global Healthy Living Foundation (GHLF), CreakyJoints® and Principal Investigator (PI) of ArthritisPower® Patient-Powered Research Network. He directs ArthritisPower along with co-PIs Shilpa Venkatachalam, PhD, MPH (GHLF) and Jeffrey Curtis, MD, MS, MPH (University of Alabama at Birmingham). Ben leads all research activities conducted by the organization, including facilitating studies conducted with academic, government, and industry partners. His research interests include examination of the factors that facilitate patient engagement as research partners, the use of patient-generated data for use in real-world evidence, and shared decision making in rheumatologic and musculoskeletal conditions. Prior to joining GHLF, Ben worked as a medical social worker and Community and Long-Term Care Coordinator for the Ottawa Regional Stroke Centre and as Research Coordinator for an evaluation of participant outcomes in Arthritis Foundation chronic disease self-management programs for arthritis. He holds a Master’s degree in Social Welfare (MSW) from the University of California at Berkeley and a doctorate in Social Work (PhD) from Columbia University.
Shilpa Venkatachalam, PhD, MPH,
Shilpa Venkatachalam, PhD, MPH, is Associate Director, Patient-Centered Research, at the Global Healthy Living Foundation (GHLF), CreakyJoints® and Co- Principal Investigator (PI) of ArthritisPower® Patient-Powered Research Network. Dr. Venkatachalam completed her undergraduate degree in Mumbai, before moving to the United Kingdom to complete a master’s degree in literature at the University of Durham, and earned her PhD in critical theory at the University of Nottingham. Following significant life events that required navigating health systems as patient and a caregiver, she earned an advanced master’s degree in global health from New York University (NYU), during which she also won the prestigious Paul Ambrose Scholars Program fellowship awarded by the by the Association for Prevention Teaching and Research. Her research interests include patient engagement, chronic pain management and shared decision making in rheumatic and musculoskeletal diseases. She was among 25 chosen by The Young Persons Chronic Disease Network in collaboration with American Cancer Society and the Harvard Global Equity Center for The Global Cancer Advocacy Training in 2015 and she has been a regular panelist for video conference presentations on Global Health Topics by the Ambassador’s Club at the United Nations as part of a UNITAIR initiative. She was diagnosed with rheumatoid arthritis in 2017.
Jeff Curtis, MD, MS, MPH,
Jeff Curtis, MD, MS, MPH is Professor of Medicine, U. of Alabama at Birmingham and Co-Principal Investigator of ArthritisPower® Patient-Powered Research Network. He served on the Core Expert Panel for the ACR’s 2008, 2012, and 2015 Recommendations for the Use of Nonbiologic and Biologic Disease Modifying Antirheumatic Drugs in RA and was the Deputy Director for a collaborative project between the FDA, the Agency for Healthcare Research and Quality (AHRQ), and a number of academic centers studying the safety of biologic agents using multiple, pooled national data sources. The evaluation of the efficacy, comparative effectiveness, and safety of the medications used to treat rheumatoid arthritis and spondyloarthritis are among Dr. Curtis’s research interests. He also serves as the co-PI of the UAB Coordinating Center of the American College of Rheumatology’s (ACR) electronic health record-based registry Rheumatology Informatics System for Effectiveness (RISE) registry. He was appointed a member of the Center for Disease Control (CDC) Advisory Committee on Immunization Practices (ACIP) Herpes Zoster workgroup. He was a member of the ACR’s task force to update recommendations for the management of glucocorticoid induced osteoporosis (GIOP). He served on the ASBMR Task Force on Atypical Subtrochanteric and Diaphyseal Fractures. Additionally, Dr. Curtis is a member of the American College of Rheumatology (ACR), the International Society for Pharmacoepidemiology (ISPE), the American Medical Informatics Association (AMIA), and the American Society of Bone and Mineral Research (ASBMR). He has been on the editorial board for Arthritis & Rheumatism, Pharmacoepidemiology and Drug Safety (PDS) and Arthritis Care and Research (AC&R).
ArthritisPower core features
From tracking your symptoms and medications to sharing your experience, ArthritisPower is there for you.
ArthritisPower registry infrastructure was funded through a Patient-Centered Outcomes Research Institute Award (PCORI Contract Number PPRN-1306-04811). ArthritisPower was jointly developed by the nonprofit Global Healthy Living Foundation (GHLF), its associated CreakyJoints arthritis patient community, and rheumatology researchers at the University of Alabama at Birmingham (UAB).
We reserve the right to change and add sponsors and partner organizations and we also reserve the right to change placement of text on the page.
Created by CreakyJoints® patient community in collaboration with patient advocates at Global Healthy Living Foundation (GHLF) and researchers at the University of Alabama at Birmingham (UAB), ArthritisPower is the first-ever patient-centered research registry for joint, bone, and inflammatory skin conditions. ArthritisPower’s past participation in PCORnet®, the National Patient-Centered Clinical Research Network, was supported through multiyear, multimillion-dollar Patient-Centered Outcomes Research Institute funding awards [PPRN-1306-04811].
Global Healthy Living Foundation (GHLF), the parent organization of ArthritisPower, receives grants, sponsorships and contracts from pharmaceutical manufacturers and private foundations. A full list of GHLF funders is publicly available here: https://www.ghlf.org/our-partners
Please keep in mind that throughout your use of ArthritisPower, you can provide feedback or ask questions at any time by contacting us. We’ve listed some frequently asked questions here for your convenience.
What conditions are included in the registry?
Currently our research includes the following conditions: Ankylosing Spondylitis, Dermatomyositis, Fibromyalgia, Gout, Inflammatory Bowel Disease, Juvenile Idiopathic Arthritis, Lupus, Osteoarthritis (degenerative arthritis), Osteoporosis/Osteopenia/low bone mineral density, Polymyositis, Psoriasis, Psoriatic Arthritis, Rheumatoid Arthritis, Scleroderma (Systemic sclerosis)] and Sjogren’s syndrome, Axial spondyloarthritis (axSpA), including Non-radiographic axSpA and Ankylosing spondylitis, D.I.S.H. diffuse idiopathic skeletal hyperostosis (D.I.S.H.)
Will ArthritisPower keep my information confidential?
Yes. The information you provide will only be used for tracking trends among patients. The only time your information would be shared with identifying data is if we are linking the data with a health institution and we want to ensure the correct person’s data is being used. Besides this, your info will not be connected with you in any way.
Is it required for me to give my Social Security number (SSN)?
No! In the event that we do ask for it, it is completely optional. It is not necessary to provide your SSN to participate in ArthritisPower.
Can ArthritisPower make health recommendations for me?
Unfortunately, no. The purpose of ArthritisPower is to track your health for both your benefit and the benefit of research. However, we will let you know about research findings to keep you up-to-date on what scientists are learning from the data you are contributing so that you can work with your doctor on your health decision making.
Get Started with ArthritisPower
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