Publications

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

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

Information on COVID-19 rapidly emerged and expanded at the onset of the pandemic. As of May 2020 it included 17,998 publications. Over 1,500 of those publications addressed rheumatic disease-related topics. 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.

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

Information on COVID-19 rapidly emerged and expanded at the onset of the pandemic. As of May 2020 it included 17,998 publications. Over 1,500 of those publications addressed rheumatic disease-related topics. 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.

Tracking Clinical Resources for Coronavirus Disease

Information on COVID-19 rapidly emerged and expanded at the onset of the pandemic. As of May 2020 it included 17,998 publications. Over 1,500 of those publications addressed rheumatic disease-related topics. 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.

Medication Interruptions and Subsequent Disease Flares During the COVID-19 Pandemic: A Longitudinal Online Study of Patients With Rheumatic Disease

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.

Evaluation of an Intervention to Support Patient-Rheumatologist Conversations About Escalating Treatment in Patients With Rheumatoid Arthritis: A Proof-Of-Principle Study

Researchers explore whether an online video intervention discussing appropriate treatment escalation improves willingness to change treatment in people living with rheumatoid arthritis (RA).

Patient Perceptions and Preferences Regarding Telemedicine for Rheumatologic Care During the COVID-19 Pandemic

The use of telemedicine surged during the pandemic. Researchers investigated perceptions and preferences regarding telemedicine among patients with autoimmune rheumatic disease.

Data Sharing Goals for Nonprofit Funders of Clinical Trials

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.
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Reproductive Health Needs Of Adolescent and Young Adult Women With Pediatric Rheumatic Diseases

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.

Tough Choices: Exploring Medication Decision-Making During Pregnancy and Lactation Among Women With Inflammatory Arthritis

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.

Pregnancy, Periods, and “The Pill”: Exploring the Reproductive Experiences Of Women With Inflammatory Arthritis

Few studies have assessed how patients' attitudes and decision-making influence their family sizes. Little is also known about how patients experience other aspects of their reproductive lives, such as menstruation and contraception. Our 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.