脊髓裂患者神经心理学护理指南。
Neuropsychological care guidelines for people with spina bifida.
机构信息
Department of Psychiatry, Children's Hospital Boston, Boston, MA, USA.
Harvard Medical School, Boston, MA, USA.
出版信息
J Pediatr Rehabil Med. 2020;13(4):663-673. doi: 10.3233/PRM-200761.
Abstract
While the neuropsychological profile for individuals with Spina Bifida (SB) can vary, often certain patterns of strengths and weaknesses are evident across the lifespan. Understanding variability related to neural structure, genetics, ethnicity, and the environment is key to understanding individual differences in outcomes and can be vital in planning interventions and tracking progress. This article outlines the SB Guideline for the Neuropsychological Care of People with Spina Bifida from the 2018 Spina Bifida Association's Fourth Edition of the Guidelines for the Care of People with Spina Bifida and acknowledges that further research in SB neurocognitive profiles is warranted.
摘要
虽然脊髓脊膜膨出（SB）患者的神经心理学特征可能存在差异，但在整个生命周期中，通常会出现某些优势和劣势模式。了解与神经结构、遗传、种族和环境相关的可变性是理解结果个体差异的关键，对于干预计划和进展跟踪至关重要。本文概述了 2018 年脊髓脊膜膨出协会第四版《脊髓脊膜膨出患者护理指南》中的脊髓脊膜膨出神经心理学护理指南，并认识到 SB 神经认知特征的进一步研究是必要的。
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Pediatrics. 2019 Oct;144(4). doi: 10.1542/peds.2019-2528.
3
Scientific methodology of the development of the Guidelines for the Care of People with Spina Bifida: An initiative of the Spina Bifida Association.《脊髓脊膜膨出人士照护指南制定的科学方法学：脊髓脊膜膨出协会的一项倡议》。
Disabil Health J. 2020 Apr;13(2):100816. doi: 10.1016/j.dhjo.2019.06.005. Epub 2019 Jun 18.
4
Finding the genetic mechanisms of folate deficiency and neural tube defects-Leaving no stone unturned.探寻叶酸缺乏与神经管缺陷的遗传机制——不放过任何蛛丝马迹。
Am J Med Genet A. 2017 Nov;173(11):3042-3057. doi: 10.1002/ajmg.a.38478. Epub 2017 Sep 25.
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