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儿童交替性偏瘫的诊断与治疗

Diagnosis and Treatment of Alternating Hemiplegia of Childhood.

作者信息

Masoud Melanie, Prange Lyndsey, Wuchich Jeffrey, Hunanyan Arsen, Mikati Mohamad A

机构信息

Duke University Children Health Center, 2301 Erwin Rd., Durham, NC, 27710, USA.

Cure AHC, Inc., 545 Irina Drive, Rolesville, NC, 27571, USA.

出版信息

Curr Treat Options Neurol. 2017 Feb;19(2):8. doi: 10.1007/s11940-017-0444-7.

Abstract

The diagnosis and treatment of patients with Alternating Hemiplegia of Childhood (AHC) and related disorders should be provided by a multidisciplinary team experienced with the spectrum of presentations of this disease, with its related disorders, with its complex and fluctuating manifestations, and with cutting edge advances occurring in the field. Involvement in research to advance the understanding of this disease and partnership with international collaborators and family organizations are also important. An example of such an approach is that of The Duke AHC and Related Disorders Multi-Disciplinary Clinic and Program, which, in partnership with the Cure AHC Foundation, has developed and applied this approach to patients seen since early 2013. The program provides comprehensive care and education directly to AHC patients and their families and collaborates with referring physicians on the care of patients with AHC whether evaluated at Duke clinics or not. It also is involved in clinical and basic research and in collaborations with other International AHC Research Consortium (IAHCRC) partners. The clinic is staffed with physicians and experts from Neurology, Cardiology, Child Behavioral Health, Medical Genetics, Neurodevelopment, Neuropsychology, Nursing, Physical and Occupational Therapies, Psychiatry, Sleep Medicine, and Speech/Language Pathology. Patients are seen either for full comprehensive evaluations that last several days or for targeted evaluations with one or few appointments.

摘要

患有儿童交替性偏瘫(AHC)及相关疾病的患者的诊断和治疗应由一个多学科团队提供,该团队要熟悉这种疾病的各种表现形式、其相关疾病、其复杂多变的症状以及该领域前沿的进展。参与推进对这种疾病的理解的研究以及与国际合作者和家庭组织建立合作关系也很重要。这种方法的一个例子是杜克AHC及相关疾病多学科诊所和项目,该项目与治愈AHC基金会合作,自2013年初以来,已针对所接诊的患者制定并应用了这种方法。该项目直接为AHC患者及其家庭提供全面的护理和教育,并与转诊医生合作,共同护理AHC患者,无论这些患者是否在杜克诊所接受评估。它还参与临床和基础研究,并与其他国际AHC研究联盟(IAHCRC)合作伙伴开展合作。该诊所的工作人员包括来自神经学、心脏病学、儿童行为健康、医学遗传学、神经发育、神经心理学、护理、物理和职业治疗、精神病学、睡眠医学以及言语/语言病理学等领域的医生和专家。患者前来就诊时,要么接受持续数天的全面综合评估,要么接受一次或几次针对性的评估。

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