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Roadmap to advance therapeutics for -related disorder: a patient organization perspective from SynGAP Research Fund.
Ther Adv Rare Dis
January 2025
SynGAP Research Fund, 2856 Curie Pl., San Diego, CA 92122, USA.
-related disorder (SRD) is a developmental and epileptic encephalopathy caused by a disruption of the gene. At the beginning of 2024, it is one of many rare monogenic brain disorders without disease-modifying treatments, but that is changing. This article chronicles the last 5 years, beginning when treatments for SRD were not publicly in development, to the start of 2024 when many SRD-specific treatments are advancing.
View Article and Find Full Text PDFDo national cancer control plans address care and research for children, adolescents, and young adults? A review of status, priorities, and recommendations across 41 European countries.
Lancet Reg Health Eur
February 2025
European Society for Paediatric Oncology (SIOPE), Clos Chapelle-aux-Champs 30, 1200, Brussels, Belgium.
Paediatric cancers, although rare, are the leading cause of disease-related mortality in European children above one year. A key pillar of the European Health Union, Europe's Beating Cancer Plan (EBCP) puts a spotlight on childhood cancer. National Cancer Control Plans (NCCPs) have a key role but did not address childhood cancers sufficiently previously.
View Article and Find Full Text PDFStrategies in Diagnosis and Therapy of External Outflow Graft Obstruction in Patients with a Fully Magnetically Levitated Left Ventricular Assist Device: A Meta-Analysis and Systematic Review.
J Clin Med
December 2024
Department of Cardiothoracic and Vascular Surgery, Deutsches Herzzentrum der Charité, 13353 Berlin, Germany.
The HeartMate 3 (HM3, Abbott) left ventricular assist device (LVAD) is the only commercially available option considered suitable for long-term circulatory support. External compression of the outflow graft causing obstruction (eOGO) is a serious adverse event affecting patients on long-term support. The obstruction occurs due to the accumulation of gelatinous substance between the bend relief and outflow graft.
View Article and Find Full Text PDFCreating, Implementing, and Assessing an Elective Queer-iculum: Creating Change Agents Through Pharmacy Education.
Am J Pharm Educ
January 2025
The University of Texas at El Paso School of Pharmacy, El Paso, Texas, USA. Electronic address:
Objective: To detail the creation and implementation of an LGBTQIA+ health elective course at a Hispanic Serving Institution and assess its preliminary impact on Doctor of Pharmacy student attitudes and perceptions of LGBTQIA+ healthcare.
Methods: An eight-week course covering various topics related to LGBTQIA+ healthcare was designed and delivered to second- and third-year Doctor of Pharmacy students who voluntarily enrolled in the course from June to July 2023. As part of an IRB approved pilot study, enrolled students completed an electronic survey before and after the elective assessing student pharmacists' perceptions of personal capabilities and attitudes as well as curriculum exposure for several LGBTQIA+ healthcare-related topics.
Epilepsy in acute psychiatric inpatient settings: Prevalence, treatment gaps, and mortality.
Epilepsy Behav
January 2025
NIHR Biomedical Research Centre at South London and Maudsley NHS Foundation Trust and King's College London, London, United Kingdom; Department of Clinical Neuroscience, Institute of Psychiatry, Psychology & Neuroscience (IoPPN), King's College London, London, United Kingdom.
Background: The underrepresentation of acute psychiatric settings in epilepsy research presents a barrier to delivering equitable healthcare for people with comorbid epilepsy and severe mental illness. We aimed to report the prevalence of epilepsy among people receiving acute psychiatric inpatient care and examine the sociodemographic and clinical characteristics influencing their treatment outcomes.
Methods: We analysed electronic patient records to estimate the lifetime prevalence of epilepsy in a retrospective cohort of 9,237 people admitted to psychiatric inpatient wards in South London between 2015 and 2019.
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