Niemann-Pick - c型疾病患者诊断、管理和随访的实用建议:巴西视角

IF 1 4区 医学 Q4 NEUROSCIENCES
Arquivos de neuro-psiquiatria Pub Date : 2025-03-01 Epub Date: 2025-05-09 DOI:10.1055/s-0045-1807714
Dafne Dain Gandelman Horovitz, André Pessoa, Marcondes Cavalcante França Junior, Roberto Giugliani, Carolina Fischinger Moura de Souza, Emília Katiane Embiruçu, Pedro Braga-Neto, Charles Marques Lourenço
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引用次数: 0

摘要

尼曼-皮克c型(NPC)疾病是一种罕见的遗传性疾病,其临床范围从产前出现的致命疾病和快速致死疾病到成人发病的慢性神经退行性疾病。鉴于巴西关于NPC疾病的信息匮乏,一组专家决定在国家层面讨论一些与疾病相关的问题。目前的手稿描述了巴西共识会议的结果,该会议针对巴西的鼻咽癌疾病的诊断、管理和随访提出了建议,考虑到临床实践的观点。这些建议包括临床表现的患者特征,如根据年龄组的全身和神经系统表现以及非典型表现;考虑到巴西的情况,诊断确认流程图;治疗,包括疾病改善治疗,支持性护理和患者随访。专家小组为巴西的鼻咽癌诊断和管理提供了客观的建议基础。作者期望这篇论文能够帮助临床医生识别、充分治疗和随访巴西的NPC患者。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Practical recommendations for diagnosis, management, and follow-up of Niemann-Pick type-C disease patients: a Brazilian perspective.

Niemann-Pick type-C (NPC) disease is a rare genetic condition with a clinical spectrum ranging from a fatal prenatally-presenting and quickly lethal disorder to an adult-onset chronic neurodegenerative condition. Given the scarcity of information regarding NPC disease in Brazil, a group of experts decided to discuss some disease-related aspects at the national level. The present manuscript describes the results of a Brazilian consensus meeting conducted to propose recommendations for the diagnosis, management, and follow-up of NPC disease in Brazil, considering the clinical practice point of view. These recommendations include patient characteristics on clinical presentation, as systemic and neurological manifestations according to the age group and atypical manifestations; a flowchart for diagnostic confirmation, considering the Brazilian scenario; and treatment, encompassing disease-modifying therapy, supportive care, and patients' follow-up. The expert panel provided an objective basis of recommendations on NPC diagnosis and management in Brazil. The authors expect that this manuscript will help clinicians to identify, adequately treat and follow-up NPC patients in Brazil.

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来源期刊
Arquivos de neuro-psiquiatria
Arquivos de neuro-psiquiatria 医学-精神病学
CiteScore
2.10
自引率
7.10%
发文量
262
审稿时长
4-8 weeks
期刊介绍: Arquivos de Neuro-Psiquiatria is the official journal of the Brazilian Academy of Neurology. The mission of the journal is to provide neurologists, specialists and researchers in Neurology and related fields with open access to original articles (clinical and translational research), editorials, reviews, historical papers, neuroimages and letters about published manuscripts. It also publishes the consensus and guidelines on Neurology, as well as educational and scientific material from the different scientific departments of the Brazilian Academy of Neurology. The ultimate goals of the journal are to contribute to advance knowledge in the areas of Neurology and Neuroscience, and to provide valuable material for training and continuing education for neurologists and other health professionals working in the area. These goals might contribute to improving care for patients with neurological diseases. We aim to be the best Neuroscience journal in Latin America within the peer review system.
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