This open-label pilot study focuses on the peer intervention program called CArdiovascular Risk assEssment for RA (CARE RA), which provides information about the association between cardiovascular disease (CVD) and rheumatoid arthritis (RA) to patients. The study is conducted by evaluating whether patients receive a CVD risk assessment more frequently if they complete the CARE RA curriculum with a peer coach versus individually.
This study aims to analyze rheumatologist and patient mental models in order to inform interventions for rheumatoid arthritis that adopt the “target to treat” (TTT) approach, which adjusts treatment to achieve a target based on disease status and activity.
Methotrexate is a commonly prescribed drug for patients diagnosed with rheumatoid arthritis (RA). Though it can positively impact disease activity, some patients experience side effects and intolerance. Salt et al. developed a scale to measure methotrexate intolerance for use in adult rheumatoid arthritis (RA) patients with an additional objective to describe its psychometric properties.
This study aims to understand patient decision-making in Axial Spondyloarthritis (axSpA) and explore how decision-making, treatment satisfaction, and biologic disease modifying antirheumatic drugs (bDMARDs) may be related.
This article describes Patient-Powered Research Networks (PPRNs) across autoimmune conditions, registry infrastructures made up of patient advocacy groups, patient communities, medical researchers and other health stakeholders.
This study aims to quantify methotrexate (MTX)-associated side effects in rheumatoid arthritis (RA) or psoriatic arthritis (PsA) patients. In the ArthritisPower app and registry, a self-controlled case series study design with electronic patient-reported outcome measures (e-PROMs) was used.
This virtual, longitudinal study explores the different patient-reported outcomes (PROs) that patients with rheumatic and musculoskeletal diseases consider important for their disease management.
There is limited information regarding treatment experience of patients with axial spondyloarthritis/ ankylosing spondylitis (axSpA/AS) receiving biological disease-modifying antirheumatic drugs (bDMARDs). This study shares the experience of 128 patients currently taking a bDMARD therapy for axSpA or AS.
Using data from a community practice-based rheumatologist network, this article explores the impact of the COVID-19 pandemic on rheumatology care and the use of telehealth.
This study explores concerns and behaviors of patients with rheumatoid arthritis (RA), psoriatic arthritis (PsA), ankylosing spondylitis (AS), and systemic lupus erythematosus (SLE) during the early months of the COVID-19 pandemic.
Research for patients, by patients.
A Creakyjoints initiative.
PatientSpot registry infrastructure was funded through a Patient-Centered Outcomes Research Institute Award (PCORI Contract Number PPRN-1306-04811). PatientSpot (formerly known as Arthritis Power) was jointly developed by the nonprofit Global Healthy Living Foundation (GHLF), its associated CreakyJoints arthritis patient community, and rheumatology researchers at the University of Alabama at Birmingham (UAB). We reserve the right to change and add sponsors and partner organizations and we also reserve the right to change placement of text on the page. Created by CreakyJoints® patient community in collaboration with patient advocates at Global Healthy Living Foundation (GHLF) and researchers at the University of Alabama at Birmingham (UAB), Arthritis Power (now PatientSpot)’s past participation in PCORnet®, the National Patient-Centered Clinical Research Network, was supported through multiyear, multimillion-dollar Patient-Centered Outcomes Research Institute funding awards [PPRN-1306-04811]. Global Healthy Living Foundation (GHLF), the parent organization of PatientSpot, receives grants, sponsorships and contracts from pharmaceutical manufacturers and private foundations. A full list of GHLF funders is publicly available here: https://www.ghlf.org/our-partners.
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