ArthritisPower is about your health, so as you might expect, we’ll be gathering health information from you.
The ArthritisPower app will ask you to share information about your well-being, pain, mobility, quality of life, and medication. You’ll also receive surveys and questionnaires from us every once in awhile. If you use health trackers like Fitbit or Jawbone, we may ask you for permission to access this data.
If applicable, we may ask you to collect blood specimens to gather more information about rheumatic diseases. Of course — this is all voluntary.
All of the information you choose to share with us is done so voluntarily. It’s completely up to you.
We’ll need some basics, such as your name and email address. We’ll also ask you about your date of birth, ethnicity, and diagnosis, so we only send you surveys that you’re eligible for.
We’re constantly trying to improve user experience with ArthritisPower. To do that, we need information about how users are using ArthritisPower. We use “cookies” that store information on your browser, and we gather information about your device, including your IP address, screen size, browser (e.g., Safari, Chrome, Explorer, Mozilla), and language. Location information is also helpful to us, but you can click “Don’t Allow” if you would prefer not to share this.
Your personal and health information will be kept indefinitely in the ArthritisPower registry. This database is specifically for patients with conditions related to skin, bones and joints, such as arthritis.
Your information will be accessible and used by our research team 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 with granted permission by the IRB
ArthritisPower exists to help people living with arthritis and related conditions.
However, 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 will update you with new findings through the contact information you provide. You can opt out at any time.
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!
Oops, you’ve missed a box. Please review the item above again.
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.
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.
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.