3 research outputs found
Provider perspectives on treatment decision-making in nephrotic syndrome
Managing patients with nephrotic syndrome (NS) remains difficult for the practicing nephrologist. This often young patient population is faced with a debilitating, relapsing and remitting disease with non-specific treatment options that are often poorly tolerated. Clinicians managing these complex patients must attempt to apply disease-specific evidence while considering the individual patient's clinical and personal situation
COVID-19 Pandemic Optimism and Vaccine Willingness among an Online Sample of US Gay, Bisexual, and Other Men Who Have Sex with Men
This paper presents data from an online sample of U.S gay, bisexual, and other men who have sex with men (GBMSM), to explore the factors associated with three dimensions of vaccine beliefs: perception of the likelihood of a COVID-19 vaccine becoming available, perception of when a COVID-19 vaccine would become available, and the likelihood of taking a COVID-19 vaccine. Data are taken from the Love and Sex in the Time of COVID-19 study, collected from November 2020 to January 2021. A sample of 290 GBMSM is analyzed, modeling three binary outcomes: belief that there will be a COVID-19 vaccine, belief that the COVID-19 vaccine will be available in 6 months, and being very likely to take the COVID-19 vaccine. In contrast to other studies, Black/African Americans and GBMSM living with HIV had higher levels of pandemic optimism and were more likely to be willing to accept a vaccine. Men who perceived a higher prevalence of COVID-19 among their friends and sex partners, and those who had reduced their sex partners, were more likely to be willing to take a COVID-19 vaccine. There remained a small percentage of participants (14%) who did not think the pandemic would end, that there would not be a vaccine and were unlikely to take a vaccine. To reach the levels of vaccination necessary to control the pandemic, it is imperative to understand the characteristics of those experiencing vaccine hesitancy and then tailor public health messages to their unique set of barriers and motivations
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CureGN Study Rationale, Design, and Methods: Establishing a Large Prospective Observational Study of Glomerular Disease
Glomerular diseases, including minimal change disease, focal segmental glomerulosclerosis, membranous nephropathy, and immunoglobulin A (IgA) nephropathy, share clinical presentations, yet result from multiple biological mechanisms. Challenges to identifying underlying mechanisms, biomarkers, and new therapies include the rarity of each diagnosis and slow progression, often requiring decades to measure the effectiveness of interventions to prevent end-stage kidney disease (ESKD) or death.
Multicenter prospective cohort study.
Cure Glomerulonephropathy (CureGN) will enroll 2,400 children and adults with minimal change disease, focal segmental glomerulosclerosis, membranous nephropathy, or IgA nephropathy (including IgA vasculitis) and a first diagnostic kidney biopsy within 5 years. Patients with ESKD and those with secondary causes of glomerular disease are excluded.
Clinical data, including medical history, medications, family history, and patient-reported outcomes, are obtained, along with a digital archive of kidney biopsy images and blood and urine specimens at study visits aligned with clinical care 1 to 4 times per year.
Patients are followed up for changes in estimated glomerular filtration rate, disease activity, ESKD, and death and for nonrenal complications of disease and treatment, including infection, malignancy, cardiovascular, and thromboembolic events.
The study design supports multiple longitudinal analyses leveraging the diverse data domains of CureGN and its ancillary program. At 2,400 patients and an average of 2 years’ initial follow-up, CureGN has 80% power to detect an HR of 1.4 to 1.9 for proteinuria remission and a mean difference of 2.1 to 3.0mL/min/1.73m2 in estimated glomerular filtration rate per year.
Current follow-up can only detect large differences in ESKD and death outcomes.
Study infrastructure will support a broad range of scientific approaches to identify mechanistically distinct subgroups, identify accurate biomarkers of disease activity and progression, delineate disease-specific treatment targets, and inform future therapeutic trials. CureGN is expected to be among the largest prospective studies of children and adults with glomerular disease, with a broad goal to lessen disease burden and improve outcomes