Publications

Below is a listing of manuscripts and abstracts produced using the ArthritisPower research registry and collected data.

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Protocol for the pilot randomized trial of the CArdiovascular Risk assEssment for Rheumatoid Arthritis (CARE RA) intervention: a peer coach behavioral intervention

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.

Rheumatologist and Patient Mental Models for Treatment of Rheumatoid Arthritis Help Explain Low Treat-to-Target Rates

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.

The development and validation of a Patient-Perceived Methotrexate Intolerance Scale for use in adult rheumatoid arthritis patients

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.

Treatment Satisfaction and Decision-making from the Patient Perspective in Axial Spondyloarthritis: Real-World Data from a Descriptive Cross-sectional Survey Study from the ArthritisPower Registry

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.

Patient-Powered Research Networks of the Autoimmune Research Collaborative: Rationale, Capacity, and Future Directions

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.

Patient-Reported Nausea and Fatigue Related to Methotrexate: A Prospective, Self-Controlled Study in the ArthritisPower Registry

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.

Which patient-reported outcomes do rheumatology patients find important to track digitally? A real-world longitudinal study in ArthritisPower

This virtual, longitudinal study explores the different patient-reported outcomes (PROs) that patients with rheumatic and musculoskeletal diseases consider important for their disease management.

Patient Perspectives on Biologics for Axial Spondyloarthritis in a Cross-sectional Study in a Predominantly Female Population: Treatment Satisfaction, Wear-off Between Doses, and Use of Supplemental Medication

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.

Disruptions in Rheumatology Care and the Rise of Telehealth in Response to the COVID-19 Pandemic in a Community Practice–Based Network

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.

Concerns, Healthcare Use, and Treatment Interruptions in Patients With Common Autoimmune Rheumatic Diseases During the COVID-19 Pandemic

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.