Information on COVID-19 rapidly emerged and expanded at the onset of the pandemic. The purpose of this review is to identify specific threats to the validity of the COVID-19 literature and to recommend resources for practicing rheumatologists and their patients.
The COVID-19 pandemic introduced many new challenges to patients with rheumatic disease. This longitudinal study assessed trends in anxiety and interruptions in disease-modifying antirheumatic drug (DMARD) use among patients with rheumatic disease.
Researchers explore whether an online video intervention discussing appropriate treatment escalation improves willingness to change treatment in people living with rheumatoid arthritis (RA).
The use of telemedicine surged during the pandemic. Researchers investigated perceptions and preferences regarding telemedicine among patients with autoimmune rheumatic disease.
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 study explores the availability, quantity, and quality of reproductive health information available to adolescent and young adult girls with pediatric-onset rheumatic conditions and their parents.
Researchers surveyed women over 40 who have had at least one pregnancy after their inflammatory arthritis diagnosis. They found that there is a need for better family planning care for women with childbearing potential.
Few studies have assessed how patients’ attitudes and decision-making influence their family sizes. This article’s findings suggest that infertility, but also potentially outsized fear and anxiety related to their diagnoses, may affect the family sizes of women with inflammatory arthritis.
This study analyzed PROMIS Fatigue SF scores in RA patients across the range of disease activity in order to evaluate score validity.
This study analyzes concerns and health behaviors in patients with vasculitis during the early phase of the COVID-19 pandemic in North America.
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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