ArthritisPower puts your health information in your hands! Track your symptoms, treatments and other health data from your computer or smartphone.
Overtime you will better understand changes in your condition and be able to work with your doctor to make informed treatment decisions.
See how your symptoms are changing – or holding steady – over time. How are you responding to new medications or other changes in treatment?
Speed the arrival of personalized medicine by helping researchers learn how different treatments work for different people. Information you provide will be overseen in a secure process that allows only trusted experts to use your information for scientific research.
Send secure reports to yourself or to your doctor summarizing information you have logged. Share how you’ve been doing to help your care team and loved ones better understand your condition.
View your reports in daily; weekly, or monthly snapshots depending on the frequency with which you track. Empower yourself with personal data to better understand your symptoms.
The people behind Arthritis Power
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.
PhD, Principal Investigator
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.
PhD, MPH, Co-Principal Investigator
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.
MD, MS, MPH, Co-Principal Investigator
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).
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.
All portrait illustrations by CreakyJoints member Sal Marx.
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
Share results with family / caregivers / healthcare professionals
Participate in paid / unpaid surveys and studies
Access to educational resources about your condition
Enter/Keep track of treatments
Track your health with customized assessments
View results over time / see how symptoms are changing / identify causes of symptom changes
“According to the Nowell and colleagues, an online, app-based method [ArthritisPower] for obtaining patient data between visits may improve accessibility and participation in a study or remote patient monitoring system requiring multiple data collection points within the same week…The entirely virtual nature of this longitudinal study is promising for future research with RA and PsA patients adopting remote patient monitoring as an essential component of digital health, where out-of-office data capture from patients is critical.”
“After obtaining consent to participate, the ArthritisPower Research Registry collects data from patients with arthritis via a free smartphone or desktop application. Participants can select from dozens of validated Patient-Reported Outcomes (PRO) that help people self-assess (measure) their experience of pain, fatigue, and other symptoms…Recently, we asked women with arthritis about their experience, concerns, and preferences with reproductive health issues. Data stemming from that research was presented at a major medical meeting and later published in a peer-review journal, thereby increasing our understanding of arthritis.”
Frequently Asked Questions
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.
Currently our research includes the following conditions:
Ankylosing Spondylitis, Axial spondyloarthritis (axSpA) including Non-radiographic axSpA, Ankylosing spondylitis, D.I.S.H. diffuse idiopathic skeletal hyperostosis (D.I.S.H.), Dermatomyositis, Fibromyalgia, Giant Cell Arteritis (GCA), Gout, Inflammatory Bowel Disease, Juvenile Idiopathic Arthritis, Lupus, Mixed Connective Tissue Disease (MCTD), Osteoarthritis (degenerative arthritis), Osteoporosis/Osteopenia/low bone mineral density, Other vasculitis, Polymyalgia Rheumatica (PMR), Polymyositis, Psoriasis, Psoriatic Arthritis, Relapsing Polychondritis, Rheumatoid Arthritis, Scleroderma (Systemic sclerosis)] and Sjogren’s syndrome, Temporal Arteritis, Undifferentiated Connected Tissue Disease (UCTD), Wegener’s
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.
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.
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.