CreakyJoints announces launch of patient-led, patient-centered research registry
CreakyJoints, the online, non-profit community for patients with rheumatoid arthritis, psoriasis and psoriatic arthritis, has announced the launch of Arthritis Power, a patient-led, patient-centered research registry in collaboration with the University of Alabama and the Patient Centered Outcomes Research Institute.
Clinical trial and other research opportunities will be provided to users, according to a press release. Additionally, participants in the studies will be able to securely donate their data for use by other patients, universities, research organizations and physicians, with data collection completed via a desktop computer, laptop or smart phone.
“Patient-centered research means that we can more effectively use big data to answer questions that are important to those living with these illnesses,” Jeffrey Curtis, MD, MPH, William J. Koopman Endowed Professor in Rheumatology and Immunology at the University of Alabama at Birmingham, Division of Clinical Immunology and Rheumatology, said in the release. “This opportunity will produce results that help patients weigh the value of health care options according to their personal circumstances, conditions and preferences.”
Making large sets of patient data available and advancing research are the aims of the project.
“The more people who join and share information about their symptoms and treatments, the more quickly we are able to find answers,” Curtis said.
Patients will also be able to use the system to track changes in their symptoms and disease progression. Patients with other muscle, skin or joint conditions, such as systemic lupus erythematosus, ankylosing spondylitis, fibromyalgia and osteoarthritis, are also invited to participate, according to the release.
“With the launch of Arthritis Power, we now have the ability to prioritize our community’s most urgent treatment and disease-management questions,” Seth Ginsberg, president and co-founder of CreakyJoints and the Global Healthy Living Foundation, said in the release. “It will be easy to track, share and send health data, enabling patients and physicians to have more productive and meaningful dialogue about ongoing treatments.”
Reference : www.creakyjoints.org.