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Harnessing the Power of the First-Ever, Patient-Led, Patient-Centered Research Registry

Harnessing the Power of the First-Ever, Patient-Led, Patient-Centered Research Registry

If you’ve been following our blog, you know that keeping patients at the center is a big thing at Crescendo. Many of us have a personal connection with patients and know how a patient-centered perspective can make a real difference. That’s why we want to highlight some of the great work our patient advocacy partners are doing to advance science and care for patients. CreakyJoints, the non-profit, online patient-support community, recently relaunched ArthritisPower, a brand-new, patient-led and patient-centered research registry for arthritis patients.

arthritis power creakyjoints

On one level, ArthritisPower is an app that enables patients to track, access and share personal health information with their healthcare team. You can even get your Vectra scores as part of the application. You also have an option to share your data with your doctor, or others you choose, to help guide treatment discussions and provide insight into longer-term trends as you manage your RA.

On another level – and what’s truly unique – is that by inputting your data, including your Vectra scores, into ArthritisPower, you are participating in a research network to help scientists understand rheumatoid arthritis better. Your de-identified information gets pooled with everyone else’s, and researchers search through these large data sets for clues hidden within populations of patients living with these conditions. The app was designed with patient input, so it focuses on what matters to patients. There also are a variety of paid and unpaid surveys you can complete to provide researchers with even deeper insights. It’s a great way to play an important role in helping people everywhere with rheumatoid arthritis.

More than 4,000 people are now using ArthritisPower, and the more people who use it, the more powerful a tool it becomes. All of us at Crescendo Bioscience is encouraged by initiatives like this that put patients at the center, and we encourage you to check the app out. If you’d like to see a video demonstrating how to use it, click this link. Congratulations to CreakyJoints for the continued great work and to the patients who are taking time and effort to find ways to advance the research for others.

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