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Background: Lymphatic disease patients make up a significant proportion of the US and world populations. Due to inadequate medical school training and underestimation of the impact of lymphatic circulation, lymphatic disease patients often have difficulty finding competent diagnosis and care. Methods and Results: The Lymphatic Education & Research Network has initiated a Centers of Excellence program to designate institutions that provide services for lymphatic disease patients. Committees of experts drafted standards for five types of Centers of Excellence. Conclusions: The Centers of Excellence program is now launched, and the description of the formation process herein could provide other organizations guidance for similar ventures.
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ObjectiveThe incidence of lipedema is poorly described due to its confusion with lymphedema. Patient education is crucial for treatment and prevention strategies but also for improving healthcare outcomes. This study assessed and compared the quality of English and Spanish online resources for patients suffering from lipedema using a multimetric approach.MethodsA deidentified Google search using the terms "lipedema" and "lipedema espaƱol" was conducted. The first 10 academic/organizational websites in each language were selected. Quality assessment was performed using the Patient Education and Materials Assessment Tool (PEMAT), Cultural Sensitivity Assessment Tool (CSAT), Simple Measure of Gobbledygook (SMOG), and facticity criteria to evaluate understandability and actionability, cultural sensitivity, readability, and factual quality, respectively.ResultsEnglish webpages scored 73.70% for understandability and 35.0% for actionability, while Spanish webpages scored 75.05% and 21.0%, respectively; no significant differences were found between languages in understandability (p = .970) and actionability (p = .895). A significantly higher proportion of Spanish resources was found to be culturally sensible than English resources (90% vs 70%; p < .001). However, no significant differences were found in the cultural sensitivity score (English 2.87 vs Spanish 3.01; p = .677). The grade reading level for Spanish materials was significantly lower compared to English materials (11.08 vs 13.45; p = .006). Factual quality was low across both languages according to the facticity framework, though English materials scored higher than Spanish (2.20 vs 1.00; p = .051).ConclusionOur results suggest that online English and Spanish materials on lipedema have inadequate actionability, facticity, and reading grade levels for patients. Nonetheless, the levels of understandability and cultural sensitivity are acceptable. Enhancing the quality of online health literature for lipedema patients presents an opportunity to alleviate psychosocial burdens and address misconceptions.
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Enhancing our understanding of lymphatic anatomy from the microscopic to the anatomical scale is essential to discern how the structure and function of the lymphatic system interacts with different tissues and organs within the body and contributes to health and disease. The knowledge of molecular aspects of the lymphatic network is fundamental to understand the mechanisms of disease progression and prevention. Recent advances in mapping components of the lymphatic system using state of the art single cell technologies, the identification of novel biomarkers, new clinical imaging efforts, and computational tools which attempt to identify connections between these diverse technologies hold the potential to catalyze new strategies to address lymphatic diseases such as lymphedema and lipedema. This manuscript summarizes current knowledge of the lymphatic system and identifies prevailing challenges and opportunities to advance the field of lymphatic research as discussed by the experts in the workshop.
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