Here's what you need to know

Your information will be accessible and used

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

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

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/patient-governors-group/

registry

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.

ArthritisPower registry

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.

Research Studies

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:

• Understanding the impact of methotrexate on fatigue
• Concerns about pregnancy and family planning among patients with inflammatory arthritis Understanding the care and treatment experiences of people living with psoriatic arthritis and ankylosing spondylitis.
• Attitudes and perceptions around medical marijuana
• Examining the effect of mindfulness meditation on arthritis symptoms like pain, physical function, and fatigue
• Comparing the effects of different treatments for inflammatory arthritis

Health Assessments

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.