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Identifying meaningful aspects of health and concepts of interest for assessment in systemic lupus erythematosus: implications for digital clinical measure development.
J Patient Rep Outcomes
December 2024
Department of Rheumatology, Hôpitaux Universitaires de Strasbourg, INSERM UMR-S 1109, Centre National de Référence des Maladies Auto-immunes Systémiques Rares (RESO), Strasbourg, France.
Objectives: Systemic lupus erythematosus (SLE) is a chronic autoimmune disease with heterogeneous clinical manifestations which significantly impacts the daily lives of patients. Herein, we aimed to (i) investigate patients' perspectives on and experience with SLE; (ii) identify meaningful aspects of health (MAHs) and concepts of interest (COIs) in SLE that could be evaluated using digital clinical measures (DCMs); and (iii) identify target DCMs for their assessment.
Methods: A mixed-methods, multistep approach was deployed for (i) exploring patients' experience with SLE through a social media listening study and focused group discussions with patients; (ii) mapping patients' experiences to define MAHs and identify COIs measurable using DCMs; (iii) selecting DCMs for the target COIs; and (iv) identifying types of wearable sensors for measuring COIs in the patients.
Useful experimental aspects of small-wedge synchrotron crystallography for accurate structure analysis of protein molecules.
Acta Crystallogr D Struct Biol
January 2025
SR Life Science Instrumentation Team, RIKEN SPring-8 Center, 1-1-1 Kouto, Sayo-cho, Sayo-gun, Hyogo 679-5198, Japan.
Recent advances in low-emittance synchrotron X-ray technology and highly sensitive photon-counting detectors have revolutionized protein micro-crystallography in structural biology. These developments and improvements to sample-exchange robots and beamline control have paved the way for automated and efficient unattended data collection. This study analyzed protein crystal structures such as type 2 angiotensin II receptor, CNNM/CorC membrane proteins and polyhedral protein crystals using small-wedge synchrotron crystallography (SWSX), which dramatically improves measurement efficiency through automated measurement.
View Article and Find Full Text PDFBackground: The quality of gynaecological surgical training has faced mounting criticism internationally with multiple countries publishing potential remedies for improvement. Simulation has the indisputable ability to mitigate against training deficiencies, however, access to and the quality of simulation varies across regions, never mind nations.
Objectives: To assess the effect on surgical skills by the introduction of a structured and integrated simulation programme with the unique aspect of being completely free of cost with the provision of a take-home laparoscopy box trainer (LBT).
Recent advancements in ultrasound-assisted biomolecule extraction from prokaryotic and eukaryotic cells: a review.
Prep Biochem Biotechnol
December 2024
Department of Chemical Engineering, Institute of Chemical Technology (ICT), Mumbai, India.
With numerous advantages over conventional techniques, ultrasound-assisted extraction (UAE) has become a viable method for the effective extraction of biomolecules from prokaryotic and eukaryotic cells. The fundamentals and workings of UAE are examined in this review, focusing on current developments, including how these impact the extraction of proteins, lipids, enzymes, and other bioactive compounds. UAE not only enhances cell disruption and mass transfer, leading to improved extraction yields, but also preserves the integrity of the extracted bioactive molecules under optimized conditions, making it a preferred choice in Biochemistry and Biotechnology.
View Article and Find Full Text PDFLongitudinal Efficacy of Nusinersen Treatment on Health-Related Quality of Life and Independence in Children With Later-Onset Spinal Muscular Atrophy.
Muscle Nerve
December 2024
Department of Neurology, Children's Hospital, Zhejiang University School of Medicine, National Clinical Research Center for Child Health, Hangzhou, China.
Introduction/aims: The rising use of disease-modifying therapy is progressively impacting the health-related quality of life (HRQoL) of patients with spinal muscular atrophy (SMA) in their daily lives. This study aimed to evaluate the changes in HRQoL and independence in children with later-onset SMA receiving longitudinal treatment with nusinersen.
Methods: Forty-nine pediatric patients with later-onset SMA (symptom onset after 6 months of age) and their caregivers were enrolled.
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