A Message from ArthritisPower principal investigators

Seth Ginsberg and Ben Nowell, Ph.D.

We are proud to present our first CreakyJoints research newsletter: sharing the latest in our patient-centered research with you and for you.

Today, we proudly count 100,000+ arthritis patients and their families who reach out to CreakyJoints for education, support, advocacy and patient-centered research. With such a large (and growing!) patient community, we have unique opportunities to learn important things about our conditions, their impact on us, and how to better manage our arthritis and related conditions. For the majority of our 17-year history as an online patient community, we shared our stories individually. But with our new research efforts, we can collectively and qualitatively share our perspective with the world.

It all started when…

It started in 2014, with a competitive and prestigious contract awarded to CreakyJoints by the Patient Centered Outcomes Research Institute (PCORI). These funds enabled us to invest in research infrastructure that would dramatically increase our capabilities as a research organization. This has enabled us to better identify and communicate the research priorities of our large and engaged community with an advanced platform (desktop and mobile app) that we have developed and tested. (Over the past several months, we’ve been hard at work updating the ArthrtisPower app with a new look and features to be released soon!) This newsletter will keep you up to speed on our current research activities and announce ongoing and future study opportunities.

What’s in a study, anyway?

The studies we’re currently focused on are not clinical trials or experimental interventions. Instead they’re what’s considered observational studies—collecting >answers from participants to learn about opinions, experiences and behaviors and to measure patient reported outcomes (PRO). ArthritisPower is part of PCORnet, the National Patient-Centered Clinical Research Network, a large, highly representative, national network for conducting clinical outcomes research – also funded by PCORI (with more than a quarter billion dollars in investment). The ArthritisPower mobile and desktop application allows patients to track their symptoms between doctor’s appointments as well as share their information with researchers to better understand patients’ experiences with medications, health outcomes, and overall quality of life. The app uses validated and reliable short surveys from the Patient Reported Outcomes Measurement Information System (PROMIS) to measure various aspects of health, such as pain interference, physical function, fatigue and other health data.

It’s important to us that technology is used to enable patients to become equal partners in health research, including incorporation of the patient view and experience living with rheumatologic conditions. Since launching the test version of ArthritisPower last year, 2200 people have registered and shared information that is being used to inform various facets of research.

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Simultaneously, our ArthritisPower Patient Governors–who are all CreakyJoints volunteers–are helping to shape research questions and the design and implementation of studies using the app that we built. ArthritisPower brings more stakeholders into the research conversation than ever before. This is exciting and, we suspect, will lead to better quality studies with findings that are more relevant to people like you making decisions about your care.

Smart minds think alike.

ArthritisPower has quickly become CreakyJoints’ flagship research platform. Created by CreakyJoints in collaboration with a team at the University of Alabama at Birmingham (led by Dr. Jeffrey Curtis, MD, one of the nation’s most respected rheumatology researchers), and supported by a multi-year, multimillion-dollar investment by PCORI, ArthritisPower has a bright future to achieve the ambitious goals we have set forth. It is the first ever patient-led, patient-centered research registry for musculoskeletal and inflammatory skin conditions, and we are already working with researchers from Yale University, Johns Hopkins University, University of Pennsylvania, Harvard and the Mayo Clinic. Experts from these presitigious academic centers have recognized the value of ArthritisPower to support their ongoing arthritis research efforts, and we are pleased to collaborate with them on a variety of projects.

Hunting for clues.

Despite being brand new, ArthritisPower has already allowed us to learn some interesting things. We now know, for example, that ArthritisPower users report worse sleep than 83% of the US population. Using these metrics and others, researchers and physicians can work towards developing new treatment strategies for arthritis patients.
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A promising future.

We’re just getting started with patient-centered research, which we couldn’t do without your involvement. We’re grateful for your participation, and we will continue to advance the research questions that are important to you as we grow our network. Look for future updates with the cool new features we’re engineering, information about what we’re learning, and other research-related news. Soon we’ll be launching a new and improved version of the ArthritisPower app, with a friendlier interface and innovative features that will make participation even easier than before. For the latest, make sure to pull up the app on your smartphone or visit ArthritisPower.org, CreakyJoints.org and our Facebook and Twitter pages.

As always, if you have any specific questions about research, you may email us at [email protected] or [email protected].

The best is yet to come. Stay tuned.

Seth Ginsberg,
President and Co-Founder, CreakyJoints/GHLF
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Ben Nowell, Ph.D.
Director, Patient-Centered Research, CreakyJoints/GHLF
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