Background The impact and consequences of the COVID-19 pandemic on people with rheumatic disease are unclear. We developed the COVID-19 Global Rheumatology Alliance Patient Experience Survey to assess the effects of the COVID-19 pandemic on people with rheumatic disease worldwide.Methods Survey questions were developed by key stakeholder groups and disseminated worldwide through social media, websites, and patient support organisations. Questions included demographics, rheumatic disease diagnosis, COVID-19 diagnosis, adoption of protective behaviours to mitigate COVID-19 exposure, medication access and changes, health-care access and communication with rheumatologists, and changes in employment or schooling. Adults age 18 years and older with inflammatory or autoimmune rheumatic diseases were eligible for inclusion. We included participants with and without a COVID-19 diagnosis. We excluded participants reporting only non-inflammatory rheumatic diseases such as fibromyalgia or osteoarthritis. Findings 12 117 responses to the survey were received between April 3 and May 8, 2020, and of these, 10 407 respondents had included appropriate age data. We included complete responses from 9300 adults with rheumatic disease (mean age 46•1 years; 8375 [90•1%] women, 893 [9•6%] men, and 32 [0•3%] participants who identified as non-binary). 6273 (67•5%) of respondents identified as White, 1565 (16•8%) as Latin American, 198 (2•1%) as Black, 190 (2•0%) as Asian, and 42 (0•5%) as Native American or Aboriginal or First Nation. The most common rheumatic disease diagnoses included rheumatoid arthritis (3636 [39•1%] of 9300), systemic lupus erythematosus (2882 [31•0%]), and Sjögren's syndrome (1290 [13•9%]). Most respondents (6921 [82•0%] of 8441) continued their antirheumatic medications as prescribed. Almost all (9266 [99•7%] of 9297) respondents adopted protective behaviours to limit SARS-CoV-2 exposure. A change in employment status occurred in 2524 (27•1%) of 9300) of respondents, with a 13•6% decrease in the number in full-time employment (from 4066 to 3514).Interpretation People with rheumatic disease maintained therapy and followed public health advice to mitigate the risks of COVID-19. Substantial employment status changes occurred, with potential implications for health-care access, medication affordability, mental health, and rheumatic disease activity.Funding American College of Rheumatology.
Monitoring of minimal residual disease (MRD) by flow cytometry (FCM) is a powerful prognostic tool for predicting outcomes in acute lymphoblastic leukemia (ALL). To apply FCM-MRD in large, collaborative trials, dedicated laboratory staff must be educated to concordantly high levels of expertise and their performance quality should be continuously monitored. We sought to install a unique and comprehensive training and quality control (QC) program involving a large number of reference laboratories within the international Berlin-Frankfurt-Münster (I-BFM) consortium, in order to complement the standardization of the methodology with an educational component and persistent quality control measures. Our QC and quality assurance (QA) program is based on four major cornerstones: (i) a twinning maturation program, (ii) obligatory participation in external QA programs (spiked sample send around, United Kingdom National External Quality Assessment Service (UK NEQAS)), (iii) regular participation in list-mode-data (LMD) file ring trials (FCM data file send arounds), and (iv) surveys of independent data derived from trial results. We demonstrate that the training of laboratories using experienced twinning partners, along with continuous educational feedback significantly improves the performance of laboratories in detecting and quantifying MRD in pediatric ALL patients. Overall, our extensive education and quality control program improved inter-laboratory concordance rates of FCM-MRD assessments and ultimately led to a very high conformity of risk estimates in independent patient cohorts.
In this work, we describe the advantages of multiplex-PCR in the specific detection of BCR-ABL transcripts in different hematological disorders and its sensitivity compared to nested PCR. Fifty-three patients were studied for the presence of BCR-ABL transcripts: 24 patients with chronic myeloid leukemia (CML), 20 with acute leukemia (AL), and 9 patients with other hematological disorders. A variant rearrangement (b3a3) was found in a single case of CML (4.2%). Four out of the 20 patients with AL (20.0%) (14 adults, 6 children) were bcr-abl(+), and in this group three cases were classified as B-acute lymphoblastic leukemia (B-ALL), and one as acute myeloblastic leukemia (AML). Two of the three patients with B-ALL were positive for b2a2 and the other one for e1a2, while in the BCR-ABL(+)AML patients a b3a2 rearrangement was observed. In conclusion, multiplex-PCR allows rapid, specific and simultaneous detection of different types of BCR-ABL transcripts in CML and ABL-BCR(+)AL. A full correlation was observed when multiplex-PCR was compared with nested PCR.
Rheumatoid arthritis (RA) is one of the most important rheumatic diseases. Its prevalence varies among ethnic groups. Genetic and environmental factors influence its incidence and prevalence. This chronic disease will increase its frequency in the future due to population aging. The personal impact of this disease on many relevant areas of an individual requires special efforts to prevent and treat it properly. Adequate advice on several recently described risk factors such as tobacco and alcohol exposure, infections, obesity, and physical exercise should be part of every medical consultation. This knowledge should be incorporated to improve health care prevention programs. Patients and clinicians must work together through better communication skills to finally improve outcomes. Including RA in priority health care lists will need special effort from rheumatology societies and better communication with policy makers.
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