Ninth International Primary Hyperoxaluria Workshop

第九届国际原发性高草酸尿症研讨会

• 批准号: 8007053
• 负责人: ROSS P HOLMES
• 金额: $ 2万
• 依托单位: WAKE FOREST UNIVERSITY HEALTH SCIENCES
• 依托单位国家: 美国
• 财政年份: 2010
• 资助国家: 美国
• 起止时间: 2010-08-01 至 2011-07-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8007053
• 关键词: Affect; Calculi; Cessation of life; Childhood; Clinical Management; Collaborations; Congresses; Diagnosis; Disease; Drug Formulations; Educational workshop; Environment; Etiology; Family; Fostering; Friends; Functional disorder; Funding; Goals; Hereditary Disease; Individual; International; Kidney Diseases; Kidney Failure; Knowledge; Laboratory Research; Lead; Nephrology; New York; Oxalates; Pathogenesis; Patients; Physicians; Primary Hyperoxaluria; Research; Research Personnel; Resource Sharing; Running; Scientist; Symptoms; improved; insight; meetings; novel; premature; public health relevance; pyridoxine; treatment strategy

DESCRIPTION (provided by applicant): Primary Hyperoxaluria is a rare genetic disease that often results in kidney failure and premature death. It often has a late diagnosis due to the similarity of symptoms to stone disease and other kidney diseases. There is no known cure apart from a small percentage of individuals who respond completely to pyridoxine therapy. The 9th International Primary Hyperoxaluria Workshop will be held in New York in August 2010 as a satellite meeting of the 15th Congress of the International Pediatric Nephrology Association. The Workshop has been held every 2 - 3 years since 1990 and represents the only meeting where scientists and physician scientists meet to specifically discuss all issues related to the diagnosis, therapy and pathophysiology of the disease. This meeting has been an invaluable resource for sharing information, fostering new ideas and forming collaborations. This meeting will be the first to be held conjointly with the IPNA meeting and will provide a unique opportunity to educate pediatric nephrologists on all aspects of the disease, but particularly its diagnosis and treatment. One half day session run in parallel will be devoted to educating affected individuals and their families on relevant aspects of the disease. Funds are requested to assist the Workshop in meeting its goals of (1) Bringing together basic scientists and physician scientists with a range of expertises to discuss current ideas on the causes, diagnosis and treatment of the primary hyperoxalurias. (2) Providing a venue and environment that encourages scientific interactions. (3) Promoting the dissemination of ideas and research strategies, that might lead to novel insights into the etiology and pathogenesis of the primary hyperoxalurias and the formulation of new treatment strategies. (4) Facilitating the entry of new, young researchers into the field of primary hyperoxaluria and other oxalate-related diseases. (5) Informing PH patients, families and friends of the latest advances in our understanding and clinical management of PH. PUBLIC HEALTH RELEVANCE: Primary Hyperoxaluria is a rare genetic disease that is studied in a limited number of research laboratories around the globe. This meeting will bring these investigators together to discuss the latest advances. The knowledge exchanged, the ideas generated, and the collaborations formed should lead to novel information that can be used to improve the diagnosis and treatment of the disease as well as increasing our understanding of its pathophysiology.

描述（由申请人提供）：原发性高草酸尿症是一种罕见的遗传性疾病，经常导致肾衰竭和过早死亡。由于症状与结石病和其他肾脏疾病相似，该病常常诊断较晚。除了一小部分人对吡哆醇治疗完全有反应外，没有已知的治疗方法。第9届国际原发性高草酸尿症研讨会将于2010年8月在纽约举行，作为国际儿科肾脏病协会第15届大会的卫星会议。该研讨会自 1990 年以来每 2 - 3 年举行一次，是唯一一次科学家和医师科学家齐聚一堂，专门讨论与疾病的诊断、治疗和病理生理学相关的所有问题的会议。这次会议是共享信息、培育新想法和形成合作的宝贵资源。这次会议将是第一次与 IPNA 会议同时举行，并将提供一个独特的机会，让儿科肾脏病专家了解该疾病的各个方面，特别是其诊断和治疗。并行举行的半天课程将专门对受影响的个人及其家人进行有关该疾病相关方面的教育。需要资金协助研讨会实现其目标：(1) 将具有一系列专业知识的基础科学家和医师科学家聚集在一起，讨论关于原发性高草酸尿症的原因、诊断和治疗的当前想法。 （二）提供鼓励科学互动的场所和环境。 （3）促进思想和研究策略的传播，这可能会对原发性高草酸尿症的病因和发病机制产生新的见解，并制定新的治疗策略。 （4）促进新的、年轻的研究人员进入原发性高草酸尿症和其他草酸盐相关疾病领域。 (5) 向PH患者、家人和朋友通报我们对PH的认识和临床管理的最新进展。 公共卫生相关性：原发性高草酸尿症是一种罕见的遗传性疾病，全球仅有少数研究实验室对此进行了研究。这次会议将把这些研究人员聚集在一起讨论最新进展。交流的知识、产生的想法和形成的合作应该产生新的信息，可用于改进疾病的诊断和治疗，并增加我们对其病理生理学的理解。