There are more than 52 million people with arthritis in the United States, yet the clinical research underway for the more than 100 rheumatic diseases and conditions doesn’t necessarily address many of the questions that are important to them and their doctors.
Arthritis Power (www.ArthritisPower.org) is the first ever patient-led, patient-generated, patient-centered research registry for arthritis. Focusing on rheumatoid arthritis, psoriatic arthritis, ankylosing spondylitis as well as other musculoskeletal conditions, the goal of Arthritis Power is to collect health data from tens of thousands of arthritis patients to support patients’ ability to compare treatments, identify new ones, and help find elusive cures.
Personal health data including data from passive sensor devices will be collected using a smartphone (e.g. iPhone, Android), laptop, Mac or PC desktop or tablet device.
Why encourage your patients to join the Arthritis Power registry?
1. Facilitate more comprehensive evaluation of patients: Using the Arthritis Power application, patients can conveniently and easily track changes in their health state over time and efficiently share the information with you and other members of the healthcare team via the “My Reports” function.
2. Want to know whether the new medication is working? Are things really getting worse? Armed with data, you and your patients will now be able to assess treatment effectiveness.
3. Trustworthy education and support: the amount of time available during office visits is short and getting shorter. Arthritis Power was created by CreakyJoints, the online, non-profit, patient support community for arthritis patients with more than 80,000 members that provides support from other patients, blogs, news and credible educational resources.
4. Having a tough time recruiting for research studies? The Arthritis Power registry (www.ArthritisPower.org) can selectively enable direct-to-patient notification about new research opportunities, while still keeping you in the loop.
5. Support personalized medicine using big data: Patient-centered research means that we can more effectively use big data to answer questions that are important to those living with these illnesses. All patients in the registry explicitly agree to enable linkage of their information with other data that you may be already collecting as part of a registry or your EHR.
Arthritis Power is convenient, easy, and free – data can be entered from any device with an internet connection. Arthritis Power is open to anyone with any form of arthritis or related bone, skin, muscle or joint condition. Together, we can empower patients to improve their own outcomes in a data-driven fashion and support research that benefits the entire arthritis community.