We’ll notify you through email or the ArthritisPower app when you may be eligible for a study. All of them are voluntary, and some may offer compensation as a thank you for your time. You can opt out of these study invitations at any time.
Every month, we’ll remind you to report your symptom severity by taking ArthritisPower health assessments. You can opt out of these monthly reminders at any time. These assessments will ask you about your pain, fatigue, sleep, and other symptoms. Your answers will help our research team understand how patients are doing over time and see trends in medications and symptoms. Based on the information you provide including conditions, medications and demographics you may also be eligible for more studies.
During this registration process, we’ll ask you for personal information like your date of birth, ethnicity, and diagnosis. Many of our research studies have specific requirements, like a particular diagnosis or age range. Providing this information allows us to only send you studies you’re likely eligible for. It also helps our researchers understand the prevalence of arthritis-related conditions among different demographic populations.
The personal and health information that you submit through this registration process, research studies, and the app will be kept indefinitely in the ArthritisPower registry. Your information will only be used to better understand how patients are affected by their conditions and treatments. The only people who have access to the ArthritisPower registry and your information are authorized researchers. A more detailed list can be found in the Informed Consent Document.
There is no cost for joining and participating. You may stop at any time. We thank you for your interest in research and in helping us learn how to improve the lives of people living with arthritis and related conditions!
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Currently our research includes the following conditions:
To understand how people are affected by a condition and its treatments, researchers need accurate information directly from patients. Your information will be stored in the ArthritisPower registry, which the ArthritisPower team will use to understand how different treatments lead to better or worse outcomes for arthritis patients. In the future, researchers may want to study new treatments and may wish to invite patients to join a clinical trial. If you’re eligible, you may receive an invitation from ArthritisPower to join those studies.
CreakyJoints, part of the not-for-profit Global Healthy Living Foundation, is a dynamic education, support, advocacy and patient-centered research organization for people with all forms of arthritis and rheumatic disease. Co-founded in 1999 by arthritis patient Seth Ginsberg, CreakyJoints has grown to a community of more than 80,000 patients and their families in all 50 states, Western Europe, South America and Australia. For more information and to become a member (for free), visit www.CreakyJoints.org.
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. ArthritisPower values the time and insights of patients that are helping guide their research, as such, Patient Governors have been compensated for their input. Learn more about the role of patient governor here: https://creakyjoints.org/research/about-arthritispower/arthritispower-patient-governors/
A patient research registry is a place to store detailed information about patients with a specific disease or condition. Researchers will use this information to gain insight into patient experiences with their medications, outcomes, and quality of life. In this case, the ArthritisPower registry is for patients with conditions involving joints, bones, and skin, such as arthritis.
There is always a risk in creating an online account. We cannot legally guarantee that a confidentiality breach won’t occur, but we will do everything we can to protect your information.
We work with patients, as well as prestigious institutions like Duke and Yale Rheumatology, to develop patient-centered research studies. Your eligibility to participate in these studies will be based on information you provide, like your diagnosis and medications. Past, current and upcoming research topics include:
As a member of ArthritisPower, we encourage you to download the ArthritisPower app (available on iOS, Android, and the web) and complete a 5-10 minute health assessment at least once a month to report your symptom severity. This helps our research team understand how patients are doing over time and see trends in medications and symptoms. You may also be eligible for more studies by completing your health assessments.
Jeffrey Curtis, MD, MS, MPH, is the William J. Koopman Endowed Professor in Rheumatology and Immunology at the University of Alabama at Birmingham (UAB). He’s also the Co-Director of the UAB Center for Education and Research on Therapeutics (CERTs) of Musculoskeletal Disorders, which has a major emphasis on evaluating the comparative effectiveness and safety of medications. He received a Master of Science (MS) degree in epidemiology at the Harvard School of Public Health and obtained additional training in clinical informatics from Stanford University.
Some of the longer surveys will compensate you for your time. We will let you know if a survey is compensated and how much you’ll receive.
The Institutional Review Board is a committee that protects the rights and welfare of people who participate in research.