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

Imaging Tests: What Do Scans Say About Your RA?

Vectra Score Imaging Scans
Imaging is one of the powerful tools your rheumatologist can use to confirm your rheumatoid arthritis (RA) diagnosis and track disease progression, or changes to your body caused by rheumatoid arthritis disease activity over time. Newer, more sophisticated imaging technologies may show signs of RA very early on. This is…
Read more

Heartfelt Parenting: Being a Mom with RA

Being a Mom with RA
I’m a mother with rheumatoid arthritis. Having RA is hard enough, but being a mom with RA had taken this difficulty to another level altogether. I love being a mother and always dreamed of having many children. Life had something different in store for me. I started noticing that something…
Read more

LaRita’s RA Journey

734182 Vectra LaRitas RA Journey Facebook Post V1 1200x628 1 060220
LaRita’s RA Journey Leading up to diagnosis When I was first trying to figure out what was going on with my body, I was in pain, but I was also in a tremendous amount of denial. I was diagnosed with rheumatoid arthritis in the early-mid 90’s. RA is a serious…
Read more

An Education #RedefiningRA

Elizabeth had just finished her master’s degree in education and was ready to start working when she began to feel that something was wrong. “I couldn’t sleep well. I was stiff when I woke up, and I had a hard time walking. I was tired all the time.”Se went to the…
Read more

Newsletter Signup

Order Vectra Test