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International workshop: what is needed to ensure outcome measures for Rett syndrome are fit-for-purpose for clinical trials? June 7, 2023, Nashville, USA.
Trials
December 2024
School of Medicine Depts of Pediatrics, Neurology and Pharmacology, Children's Hospital Colorado/University of Colorado, 12800 E 19th, MS8102, Aurora, CO, 80045, USA.
Introduction: The clinical, research and advocacy communities for Rett syndrome are striving to achieve clinical trial readiness, including having fit-for-purpose clinical outcome assessments. This study aimed to (1) describe psychometric properties of clinical outcome assessment for Rett syndrome and (2) identify what is needed to ensure that fit-for-purpose clinical outcome assessments are available for clinical trials.
Methods: Clinical outcome assessments for the top 10 priority domains identified in the Voice of the Patient Report for Rett syndrome were compiled and available psychometric data were extracted.
Tackling algorithmic bias and promoting transparency in health datasets: the STANDING Together consensus recommendations.
Lancet Digit Health
January 2025
University Hospitals Birmingham NHS Foundation Trust, Birmingham, UK; National Institute for Health and Care Research (NIHR) Birmingham Biomedical Research Centre, Birmingham, UK; Centre for Patient Reported Outcomes Research, School of Health Sciences, College of Medical and Dental Sciences, Birmingham, UK; University of Birmingham, Birmingham, UK. Electronic address:
Article Synopsis
- There is a significant risk of reinforcing existing health inequalities in AI health technologies due to biases, primarily stemming from the datasets used.
- The STANDING Together recommendations focus on transparency in health datasets and proactive evaluation of their impacts on different population groups, informed by a comprehensive research process with over 350 global contributors.
- The 29 recommendations are divided into guidance for documenting health datasets and strategies for using them, aiming to identify and reduce algorithmic biases while promoting awareness of the inherent limitations in all datasets.
Somatic PTEN and ARID1A loss and endometriosis disease burden: a longitudinal study.
Hum Reprod
December 2024
Department of Obstetrics and Gynecology, University of British Columbia, Vancouver, BC, Canada.
Study Question: Is there an association between the somatic loss of PTEN (phosphatase and tensin homolog) and ARID1A (AT-rich interaction domain 1A) and endometriosis disease severity and worse clinical outcomes?
Summary Answer: Somatic PTEN loss in endometriosis epithelium was associated with greater disease burden and subsequent surgical complexity.
What Is Known Already: Somatic cancer-driver mutations including those involving the PTEN and ARID1A genes exist in endometriosis without cancer; however, their clinical impact remains unclear.
Study Design, Size, Duration: This prospective longitudinal study involved endometriosis tissue and clinical data from 126 participants who underwent surgery at a tertiary center for endometriosis (2013-2017), with a follow-up period of 5-9 years.
International Symposium on Ruminant Physiology: Current perspective on rumen microbial ecology to improve fiber digestibility.
J Dairy Sci
December 2024
Centre for Microbiome Research, School of Biomedical Sciences, Queensland University of Technology (QUT), Translational Research Institute, Woolloongabba, QLD, Australia; Faculty of Biosciences, Norwegian University of Life Sciences, Ås, Norway; Faculty of Chemistry, Biotechnology and Food Science, Norwegian University of Life Sciences, Ås, Norway.
Although cellulose has received the most attention, further research is needed for a complete comprehension of other fiber components in forage and nonforage fiber sources corresponding with the array of enzymes needed for depolymerization and resulting fermentation of sugars. The carbohydrate-active enzymes (CAZymes) have been described in detail herein, although new information will no doubt accumulate in the future. Known CAZymes are attributed to taxa that are easily detected via 16S rRNA gene profiling techniques, but such approaches have limitations.
View Article and Find Full Text PDFTargeting interleukin-6 pathways in giant cell arteritis management: A narrative review of evidence.
Autoimmun Rev
December 2024
Department of Autoimmune Diseases, Institut D'Investigacions Biomèdiques August Pi I Sunyer (IDIBAPS), University of Barcelona, Gran Via de les Corts Catalanes, 585, L'Eixample, 08007 Barcelona, Spain.
Giant cell arteritis (GCA) is a chronic inflammatory vasculitis with a significant impact on vascular and patient health. It may present with non-specific symptoms and can lead to severe complications if not managed effectively. This narrative review explores the treatment of GCA with interleukin-6 (IL-6) pathway inhibitors, focusing on key studies from selected databases published between 2018 and 2024.
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