CreakyJoints, a digital arthritis community for patients and caregivers worldwide and part of the Global Healthy Living Foundation (GHLF), announces the availability of ArthritisPower Español, a patient-centered research registry entirely available in Spanish for people living with joint, bone and inflammatory skin conditions, like arthritis.
ArthritisPower Español invites Spanish speakers, many of whom self-identify as Hispanic, to proactively participate in their disease management and contribute to better understanding of people living with arthritis and other inflammatory disease.
“It’s incredibly exciting to offer ArthritisPower Español to our Spanish-speaking community. We know that engaged patients – those who are educated about their disease and participate in shared decision-making with their providers – have improved health outcomes.
“ArthritisPower Español is an easy-to-use tool that will help patients monitor the aspects of their disease most important to them and discuss their data with their doctors.”
— Daniel Hernandez, MD, Director of Medical Affairs and Hispanic Outreach, CreakyJoints Español
Available as a free mobile and desktop application, the ArthritisPower Research Registry first launched in 2015 and now includes more than 30,000 people who track their experience of rheumatic, musculoskeletal and other inflammatory diseases using the same Patient Reported Outcome (PRO) measures used in their health care provider’s office. Patients can select from dozens of PROs to track – ranging from pain, fatigue, physical function, and more – and share such data directly with their doctor. They can also participate in voluntary research studies.
Results from previously conducted ArthritisPower studies have been presented at U.S. and international medical meetings and published in peer-reviewed journals. Launching ArthritisPower Español is a deliberate investment by CreakyJoints and their parent organization, the Global Healthy Living Foundation, to encourage people most comfortable communicating in Spanish to proactively contribute to their health data to improve their personal and community understanding of arthritis.
“Given what we know of the health disparities experienced by Hispanics in the United States, their collective data will be a powerful tool to inform researchers and health providers about the needs of this specific population of the arthritis community. We’re excited about expanding the reach of the ArthritisPower Research Registry and look forward to welcoming Spanish-speaking members to our research community.”
— Shilpa Venkatachalam, PhD, who is the Associate Director, Patient Centered Research, at CreakyJoints and the Global Healthy Living Foundation and is a coprincipal investigator of the ArthritisPower Patient-Powered Research Registry
Patient Governor Group
Select ArthritisPower Español participants will be invited to join the existing ArthritisPower Patient Governor Group, which is responsible for co-evaluating research study requests in collaboration with clinicians, researchers and CreakyJoints and also contributes perspective on what research questions should be asked in the future in ArthritisPower.
“Part of our mission is to provide patients with opportunities to amplify their voice and feel heard. We look forward to seeing the continued growth of ArthritisPower, which began with infrastructure funding from the Affordable Care Act’s Patient Centered Outcomes Research Institute, and for users to benefit from the data they collect and share with their provider team.”
— Louis Tharp, executive director and co-founder of CreakyJoints
[Source(s): CreakyJoints, Business Wire]
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