Interdisciplinary Workshop on Vascular Anomalies Associated with Coagulopathies

与凝血病相关的血管异常跨学科研讨会

• 批准号: 8203201
• 负责人: Denise Martin Adams
• 金额: $ 2.75万
• 依托单位: MEDICAL COLLEGE OF WISCONSIN
• 依托单位国家: 美国
• 财政年份: 2011
• 资助国家: 美国
• 起止时间: 2011-08-01 至 2012-07-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8203201
• 关键词: Acceleration; Achievement; Affect; Agreement; Algorithms; Applications Grants; Area; Attention; Basic Science; Blood Coagulation Disorders; Blood Vessels; Caring; Case Study; Child; Clinical; Clinical Management; Clinical Research; Clinical Sciences; Collaborations; Communication; Communities; Consensus; Country; Diagnosis; Diagnostic; Disease; Educational workshop; Evaluation; Event; Expert Opinion; Family; Fostering; Funding; Future; Generations; Goals; Guidelines; Hemorrhage; Infant; Infant Care; Information Dissemination; Investigation; Journals; Kaposiform Hemangioendothelioma; Knowledge; Lesion; Life; Link; Literature; Medical; Morbidity - disease rate; Neoplasms in Vascular Tissue; Organ; Outcome; Patients; Physicians; Provider; Publications; Publishing; Request for Applications; Research; Research Personnel; Risk; Scientist; Severities; Therapeutic; Therapeutic Intervention; Thrombocytopenia; Time; Treatment Protocols; Tufted Hemangioma; Wisconsin; base; clinical care; clinical practice; disease natural history; evidence base; expectation; experience; falls; improved; innovation; interdisciplinary approach; medical schools; meetings; mortality; multidisciplinary; patient population; standardized care; symposium; treatment response

DESCRIPTION (provided by applicant): This grant application requests support for a meeting of multidisciplinary clinicians and scientists focusing on two vascular anomalies associated with high morbidity and mortality, Kaposiform hemangioendothelioma (KHE) and multifocal lymphangioendotheliomatosis with thrombocytopenia (MLT). KHE and tufted angioma are rare vascular tumors often associated with Kasabach Merritt Phenomenon (KMP), a form of consumptive coagulopathy. MLT is another rare vascular anomaly associated with coagulopathy and life-threatening bleeding events. Since both of these disorders involve multiple organs, the disorders inherently require an interdisciplinary approach to care and research. Clinical management of infants and children with these disorders is hampered by under-recognition of these lesions, ineffective therapies, and lack of communication between multidisciplinary care providers. Investigations by our group have already contributed essential fundamental knowledge about these two disorders so that the additional expertise provided by such a workshop will quickly provide translational activities that will improve clinical practice. The proposed workshop will bring together expert clinicians and investigators in the field of vascular anomalies in an effort to exchange institutional experience and foster the collective creation of innovative treatment protocols and algorithms for these rare patient populations. The overall goal of this workshop is to provide a forum for open and transparent communication between expert clinicians, clinician scientists, and basic science researchers with experience with KHE/KMP or MLT patients. Emergent from these discussions, we expect: (1) identification of institutional inconsistencies and knowledge gaps, (2) generation of clinical care guidelines, and (3) acceleration of research directives and scientific discoveries for children with KHE with and without KMP and MLT. The collective experience of multiple physicians in this area will provide uniform and agreed upon criteria for accurate diagnosis and best practices for treatment that will be disseminated to the entire scientific community through publications in medical journals. PUBLIC HEALTH RELEVANCE: The proposed conference will bring together expert physicians and researchers in the field of vascular anomalies from across the country to further the scientific community's understanding in two areas: (1) kaposiform hemangioendothelioma and tufted angioma with and without Kasabach Merritt Phenomenon and (2) multifocal lymphangioendotheliomatosis with thrombocytopenia. At the conclusion of this multidisciplinary workshop, doctors will have a better understanding of how to care for infants and children with these two diseases, researchers will be able to prioritize future areas of research, and all information will be shared with scientists worldwide through the publications of results in medical journals.

描述（由申请人提供）：本拨款申请请求支持多学科临床医生和科学家会议，重点关注与高发病率和死亡率相关的两种血管异常，即卡波西样血管内皮瘤（KHE）和伴血小板减少症的多灶性淋巴管内皮瘤病（MLT）。 KHE 和簇状血管瘤是罕见的血管肿瘤，通常与卡萨巴赫梅里特现象 (KMP)（一种消耗性凝血病）相关。 MLT 是另一种罕见的血管异常，与凝血障碍和危及生命的出血事件相关。由于这两种疾病都涉及多个器官，因此这些疾病本质上需要跨学科的护理和研究方法。由于对这些病变的认识不足、治疗无效以及多学科护理人员之间缺乏沟通，对患有这些疾病的婴儿和儿童的临床管理受到阻碍。我们小组的研究已经提供了关于这两种疾病的重要基础知识，因此此类研讨会提供的额外专业知识将迅速提供转化活动，从而改善临床实践。拟议的研讨会将汇集血管异常领域的专家临床医生和研究人员，以交流机构经验并促进针对这些罕见患者群体集体创建创新治疗方案和算法。本次研讨会的总体目标是为具有 KHE/KMP 或 MLT 患者经验的临床专家、临床科学家和基础科学研究人员之间提供一个开放、透明的交流论坛。从这些讨论中，我们期望：(1) 确定机构的不一致和知识差距，(2) 制定临床护理指南，以及 (3) 加速针对有或没有 KMP 和 MLT 的 KHE 儿童的研究指导和科学发现。该领域多位医生的集体经验将为准确诊断和最佳治疗实践提供统一且商定的标准，这些标准将通过医学期刊上的出版物传播给整个科学界。 公共健康相关性：拟议的会议将汇集全国血管异常领域的专家医生和研究人员，以加深科学界对两个领域的理解：(1) 卡波西样血管内皮瘤和簇状血管瘤，伴有或不伴有卡萨巴赫梅里特现象和 ( 2）多灶性淋巴管内皮瘤病伴血小板减少症。在本次多学科研讨会结束时，医生将更好地了解如何护理患有这两种疾病的婴儿和儿童，研究人员将能够确定未来研究领域的优先顺序，所有信息将通过出版物与世界各地的科学家共享医学期刊上的结果。