Proceedings of a consensus conference for the management of patients with urea cycle disorders
Proceedings of a consensus conference for the management of patients with urea cycle disorders
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DOI：
10.1067/mpd.2001.111831
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发表时间：
2001-01-01
影响因子：
5.1
通讯作者：
Tuchman, M
中科院分区：
文献类型：
--
作者：
Summar, M;Tuchman, M
为了制定尿素循环障碍患者的治疗标准，2000 年 4 月 27 日至 29 日在华盛顿特区召开了一次共识会议。会议参与者包括医生、科学家、护士、营养师和遗传咨询师，他们都是这些疾病的各个医学领域的专家。美国食品药品监督管理局和家长支持团体国家尿素循环障碍基金会的代表也参加了会议。会议设定的目标是（1）利用该领域专家的最新信息和经验就尿素循环障碍的诊断和治疗指南达成共识，（2）建立医疗保健专业人员的协作网络，以在临床管理和研究领域推进尿素循环障碍患者的病因，以及（3）通过出版 会议记录发表在一本广为阅读的期刊上。本简介后面的文章代表了会议中讨论的主题的当前知识状况以及每个演讲之后的讨论摘要。根据所有参与者的意见，我们试图涵盖那些被认为与专家和患者最相关的主题。正如读者所理解的，许多与治疗有关的未解决和有争议的问题尚未通过严格的科学方法进行研究。另一方面，专家组在许多问题上达成了一致。在许多情况下，有关各个主题的可靠信息的可用性决定了能否达成共识。
In an effort to develop standards for the treatment of patients with urea cycle disorders, a consensus conference was held in Washington, DC, from April 27-29, 2000. Conference participants included physicians, scientists, nurses, dieticians, and a genetic counselor, all experts in their various medical fields in these diseases. Representatives from the Food and Drug Administration and the National Urea Cycle Disorders Foundation, a parents support group, also participated in the conference. The goals set forth for the conference were to (1) reach a consensus on diagnostic and therapeutic guidelines for urea cycle disorders with the most up-to-date information and the experience of experts in the field, (2) establish a collaborative network of health care professionals to advance the cause of patients with urea cycle disorders in the areas of clinical management and research, and (3) provide help to health care providers in the recognition and management of these complex disorders by publishing the proceedings of the conference in a widely read journal. The articles that follow this introduction represent the current state of knowledge on the topics addressed in the conference and a summary of the discussions that followed each of the presentations. With input from all the participants, we tried to cover those topics that were believed to be the most relevant both to the experts and to patients. As the reader will appreciate, many unresolved and controversial issues pertaining to treatment have yet to be studied by rigorous scientific methods. On the other hand, there are many issues on which the panel agreed. In many instances the availability of reliable information on the respective topics determined whether consensus could be reached.