Proceedings of a consensus conference for the management of patients with urea cycle disorders.
نویسندگان
چکیده
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.
منابع مشابه
Clinical and Biochemical Characterizations of Pediatric Patients with Urea Cycle Disorders in Upper Egypt: A Case- Control Study
Background: The diagnosis of inborn errors of metabolism is generally challenging. We aimed to explore various types of urea cycle disorders (UCDs), and their clinical presentations and biochemical findings among Egyptian pediatric patients. Materials and Methods: This case-control study was conducted on 86 participants categorized into ...
متن کاملWhy Do Children With Propionic Acidemia Or Urea Cycle Disorders Rarely Show Autistic Behavior?
Derrick MacFabe’s hypothesis that propionic acid generated by gut bacteria induces autism [1], while compelling, leaves one question largely unanswered: Why do children with inborn propionic acidemia rarely show autistic behavior? Although exacerbations of Propionic Acidemia (PA) bear “some resemblance” to autism spectrum disorders (ASD), MacFabe noted, only one case of autism associated with P...
متن کاملProceedings of the First MEFOMP International Conference of Medical Physics: November 2-4, 2011, Shiraz, Iran
متن کامل
Protection of Business and Production of Private Sector in Enforcement Proceedings
Forced enforcement of judicial decisions such as seizure causes difficulties in the production cycle. There are no restrictions on the seizure in the enforcement of sentences against production centers, including legal entities, and the determination of the type of property for seizure is belonged to winner and in contrast to the real persons, the rule of "immunity" is not identified for them. ...
متن کاملCurrent strategies for the management of neonatal urea cycle disorders.
The treatment of newborns with urea cycle disorders has evolved over the years into a complex multidisciplinary effort. The complexity derives from the number of issues that must be addressed simultaneously. At the Urea Cycle Disorders Consensus Meeting held in Washington, D.C., a panel of physicians and other professionals with extensive experience in this field was assembled to bring some sys...
متن کاملذخیره در منابع من
با ذخیره ی این منبع در منابع من، دسترسی به آن را برای استفاده های بعدی آسان تر کنید
برای دانلود متن کامل این مقاله و بیش از 32 میلیون مقاله دیگر ابتدا ثبت نام کنید
ثبت ناماگر عضو سایت هستید لطفا وارد حساب کاربری خود شوید
ورودعنوان ژورنال:
- The Journal of pediatrics
دوره 138 1 Suppl شماره
صفحات -
تاریخ انتشار 2001