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.
The purpose of this paper is to detail a set of aspirational goals and forward thinking, collaborative data sharing solutions for nonprofit funders to fold into existing funding policies. The goals of this paper convey the complexity of the opportunities and challenges facing nonprofit funders and the appropriate prioritization of data sharing within their organizations.
This article, published in the Journal of the American Medical Informatics Association, explores how patient-powered research networks (PPRNs) can be used to query health plans’ claims data to identify patients for research opportunities.
Patient-Powered Research Networks (PPRNs) are a unique type of patient-powered patient registry for patient-centered outcomes research. Nowell et al. describe the governance structure of a newly formed PPRN and the activities undertaken prelaunch and postlaunch to evaluate and improve the engagement of patient stakeholders in governance. Members of an online community for patients are willing to share their expertise to participate in and shape research governance and are able to provide more specific recommendations for improvement than investigator-led pre-evaluation/post evaluation.
Nowell writes that patient-generated data has the potential to improve health outcomes and drive innovation and these potentials have not been fully realized. Nowell highlights the challenges of collecting and using real-world data, the value and challenges of patient-generated data for real-world evidence and engaged patient research networks. Patients can provide real-world data but must be appropriately and effectively engaged to do so.
This article describes key issues, processes, and outcomes related to the development of a patient registry for rheumatology research using a digital platform to track useful data about patients’ conditions for their own use while contributing to research. ArthritisPower provides evidence of the value of digital interventions to build community support for research and to transform patient engagement and patient-generated data capture.
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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