A5001011559- Rheumatoid Arthritis Research and Therapies
- Autoimmune and Inflammatory Disorders Research
- Systemic Lupus Erythematosus Research
- Spondyloarthritis Studies and Treatments
- Health Systems, Economic Evaluations, Quality of Life
- Psoriasis: Treatment and Pathogenesis
- Social Media in Health Education
- Patient-Provider Communication in Healthcare
- Telemedicine and Telehealth Implementation
- Lymphoma Diagnosis and Treatment
- Adolescent and Pediatric Healthcare
- Chronic Lymphocytic Leukemia Research
- Total Knee Arthroplasty Outcomes
- Vasculitis and related conditions
- Inflammatory Bowel Disease
- Fibromyalgia and Chronic Fatigue Syndrome Research
- Statistical Methods in Clinical Trials
- SARS-CoV-2 and COVID-19 Research
- Microscopic Colitis
- Vaccine Coverage and Hesitancy
- Patient Satisfaction in Healthcare
- Bariatric Surgery and Outcomes
- COVID-19 Clinical Research Studies
- Pregnancy and Medication Impact
- Otitis Media and Relapsing Polychondritis
Global Healthy Living Foundation
2017-2024
Massachusetts General Hospital
2024
University of North Carolina at Chapel Hill
2022
Carnegie Mellon University
2022
Yale University
2022
University of Alabama at Birmingham
2022
University of Massachusetts Chan Medical School
2022
Berkshire Medical Center
2022
Durham VA Medical Center
2022
Emory University
2022
To assess concerns and healthcare-related behaviors of patients with autoimmune rheumatic diseases during the coronavirus disease 2019 (COVID-19) pandemic.Adults from United States rheumatoid arthritis (RA), psoriatic (PsA), ankylosing spondylitis (AS), systemic lupus erythematosus (SLE) ArthritisPower Patient-Powered Research Network CreakyJoints patient community completed surveys. Concerns were compared among different conditions, disease-modifying antirheumatic drug (DMARD) use,...
Abstract Background Patient-reported outcomes (PROs) are increasingly used to track symptoms and assess disease activity, quality of life, treatment effectiveness. It is therefore important understand which PROs patients with rheumatic musculoskeletal consider most for management. Methods Adult US within the ArthritisPower registry ankylosing spondylitis, fibromyalgia syndrome, osteoarthritis, osteoporosis, psoriatic arthritis, rheumatoid systemic lupus erythematosus were invited select...
We describe the journey to diagnosis of ankylosing spondylitis (AS) from patient perspective and examine differences in this by sex.US adults aged ≥ 18 years with a self-reported AS were recruited online through CreakyJoints, support community, ArthritisPower, research registry. Respondents completed web-based survey on sociodemographics, disease burden, history. Results stratified sex time using two-sample t tests χ2 tests, respectively, observe across groups; P < 0.05 was considered...
Abstract Background There are limited real-world data on the diagnostic experiences of patients with psoriatic arthritis (PsA), including medical care sought and potential barriers to diagnosis. We aim describe patient related receiving a PsA Methods Ours was mixed-method, 2-phase study. Phase 1 comprised concept elicitation cognitive interviews clinical experts adults diagnosed develop cross sectional, web-based survey. US self-reported diagnosis were recruited through support community...
We aimed to compare concerns, social distancing, health care disruptions, and telemedicine use in patients with autoimmune rheumatic disease (ARD) non-ARD evaluate factors associated immunomodulatory medication interruptions.Patients a multistate community rheumatology practice network completed surveys from April 2020 May 2020. Adults common ARD (rheumatoid arthritis, spondyloarthritis, systemic lupus erythematosus) or (gout, osteoarthritis, osteoporosis) were evaluated. Concerns about...
Digital health studies using electronic patient reported outcomes (ePROs), wearables, and clinical data to provide a more comprehensive picture of health. Newly initiated patients on upadacitinib or adalimumab for RA will be recruited from community settings in the Excellence NEtwork RheumatoloGY (ENRGY) practice-based research network. Over period three six months, streams collected (1) linkable physician-derived data; (2) self-reported daily weekly ePROs through ArthritisPower registry...
We sought to identify (1) what types of information US adults with rheumatic and musculoskeletal diseases (RMD) perceive as most important know about their disease, (2) functions they would use in an RMD-specific smartphone app.
The goal of this study was to ascertain COVID-19 vaccine uptake, reasons for hesitancy, and self-reported flare in a large rheumatology practice-based network.
Objective We aimed to assess trends in anxiety and interruptions disease‐modifying antirheumatic drug (DMARD) use among patients with rheumatic diseases during the COVID‐19 pandemic evaluate whether DMARD were associated disease flares. Methods ArthritisPower, Vasculitis Patient‐Powered Research Network, other patient organizations invited members join a 52‐week longitudinal study, baseline surveys completed March 29 June 30, 2020, follow‐up through May 2021. Logistic regression...
To assess the perceptions and preferences of telemedicine among patients with autoimmune rheumatic diseases during COVID-19 pandemic.We conducted an online survey diseases. Attitudes about (i.e., acceptability), evaluated using validated Telemedicine Perception Questionnaire (TMPQ), visit satisfaction were assessed for different experiences types disease.Of 3,369 invitations, 819 responses received. Participants had a mean ± SD age 58.6 11.6 years mostly White (n = 759, or 92.7%) female 702,...
Background Digital health studies using electronic patient-reported outcomes (ePROs) and wearables bring new challenges, including the need for participants to consistently provide trial data. Objective This study aims characterize engagement, protocol adherence, data completeness among with rheumatoid arthritis enrolled in Tracking of Arthritis Longitudinally (DIGITAL) study. Methods Participants were invited participate this app-based study, which included a 14-day run-in an 84-day main In...
The magnitude and frequency of temporally related methotrexate (MTX)-associated side effects in rheumatoid arthritis (RA) or psoriatic (PsA) patients are difficult to quantify using traditional research methods. As proof concept designed part implement digital data collection for remote patient monitoring, we conducted a study implementing self-controlled case series analytic methods understand MTX-related symptoms RA PsA. In phase 1, adults with PsA from the ArthritisPower® Registry (past...
Abstract Background The current burden of Crohn’s disease (CD) and ulcerative colitis (UC) in minority populations is largely unknown. We sought to evaluate the relative prevalence CD UC across racial ethnic groups within National Patient-Centered Clinical Research Network (PCORnet). Methods queried electronic health records from 337 centers January 2013 December 2018. compared racial/ethnic general PCORnet using χ 2 univariable logistic regression. Results Among 39,864,077 patients, 114,168...
Abstract Objective Racial and ethnic disparities in arthroplasty utilization are evident, but the reasons not known. We aimed to identify concerns that may contribute barriers from patient’s perspective. Methods identified patients’ about by performing a mixed methods study. Themes during semi-structured interviews with Black Hispanic patients advanced symptomatic hip or knee arthritis were used develop questionnaire quantify prioritize their concerns. Multiple linear logistic regression...
Rheumatoid arthritis (RA) is a condition with symptoms that vary over time. The typical 3- to 6-month interval between physician visits may lead patients failing recall or underreporting experienced during the interim. Wearable digital technology enables regular passive collection of patients' biometric and activity data. If it shown be strongly related data captured by patient-reported outcome (PRO) measures, information collected passively from wearable could serve as an objective proxy...
Patient-Powered Research Networks (PPRNs) are US-based registry infrastructures co-created by advocacy groups, patient research partners, academic investigators, and other healthcare stakeholders. collect information directly from patients to conduct disseminate the results of patient-centered/powered that helps make more informed decisions about their healthcare. gather utilize real-world data patient-reported outcomes comparative effectiveness, safety, research, leverage Internet...
Objective This study aimed to analyze the concerns and health-related behaviors in patients with vasculitis during early phase of coronavirus disease 2019 (COVID-19) pandemic North America. Methods Patients America were invited complete an online survey through Vasculitis Patient-Powered Research Network collaboration Foundation Relapsing Polychondritis Foundation. Questions focused on related doctors' visits, tests, medication, telehealth use. Factors affecting their concern determined....
Aim: Research regarding decisions patients make about total knee arthroplasty, apart from having the procedure or not, are limited. Understanding patient decision making and related information needs is essential for shared making. Methods: Focus groups with an online community-based sample identified arthroplasty beyond to have surgery itself. An survey was used determine relative importance of five major evaluate available. Results: Patients did not feel they enough important surgeon,...
Background Mindfulness can improve overall well-being by training individuals to focus on the present moment without judging their thoughts. However, it is unknown how much mindfulness practice and are necessary well-being. Objective The primary aim of this study was determine whether a standard 8-session web-based mindfulness-based cognitive therapy (MBCT) program, compared with brief 3-session intervention, improved participant In addition, we sought explore treatment effects differed...
Objective To evaluate the relative prevalence of 8 rheumatic and musculoskeletal diseases (RMDs) across racial ethnic groups within National Patient-Centered Clinical Research Network (PCORnet). Methods Electronic health records from participating PCORnet institutions systems January 1, 2013, to December 31, 2018, were used identify adult patients with ≥ 2 diagnosis codes for rheumatoid arthritis (RA), systemic lupus erythematosus (SLE), osteoporosis (OP), granulomatosis polyangiitis (GPA),...
The impact of upadacitinib on rheumatoid arthritis (RA) symptoms was evaluated during the first 12 weeks treatment via patient-reported outcomes (PROs) using a mobile health application (app). Participating rheumatologists from CorEvitas RA Registry (prospective, observational cohort) recruited patients with initiating treatment. A modified version ArthritisPower® app used to collect PROs, including Routine Assessment Patient Index Data 3 (RAPID3), duration morning joint stiffness, and...