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.

Recent Posts

#RedefiningRA and Really Living

It’s really hard to get Carol down. A bubbly go-getter, this motorcycle-riding, belly-dancing grandmother of six works in an oil refinery by day and enjoys a rural, outdoor lifestyle with family in her leisure hours. But in 2004 she was a little off her game. She had been in a…
Read more

Managing Rheumatoid Arthritis with a Primary Care Physician

Although Rheumatoid Arthritis affects more than 1.3 million Americans, approximately one percent of the population, there are only about 6,000 rheumatologists in the US – and not all of them work full-time.[1]That means it can sometimes be tough to get specialty care. Unfortunately, this trend is expected to grow as…
Read more

Surprise! All I Hoped For … and a Little Bit More!

Stephanie & Pregnancy
Almost two years ago I shared with our Vectra Voice community my experience on the Dr. Phil show, where, for the first time, I publicly shared my feelings around wanting to have a baby. Stephanie On Dr.Phil Many people who know me were shocked to hear my secret longing for…
Read more

New Year, New You: Wellness Resolutions

Wellness Resolutions
At the end of the year, many of us take some well-deserved time off to celebrate the holidays with family and friends: baking and decorating cookies with the kids, shopping for last-minute gifts, or watching football. It’s a time to reflect, relax and replenish your spirit. No matter what you…
Read more

Newsletter Signup

Order Vectra Test