Clinical pathways for inborn errors of metabolism: warranted and feasible

被引：7

作者：

Demirdas, Serwet ^{[1
]}

van Kessel, Imke N. ^{[1
]}

Korndewal, Marjolein J. ^{[1
]}

Hollak, Carla E. M. ^{[2
]}

Meutgeert, Hanka ^{[3
]}

Klaren, Anja ^{[3
]}

van Rijn, Margreet ^{[4
]}

van Spronsen, Francjan J. ^{[4
]}

Bosch, Annet M. ^{[1
]}

机构：

[1] Univ Amsterdam, Acad Med Ctr, Dept Pediat, Emma Childrens Hosp, NL-1105 AZ Amsterdam, Netherlands

[2] Univ Amsterdam, Acad Med Ctr, Dept Internal Med, Div Endocrinol & Metab, NL-1105 AZ Amsterdam, Netherlands

[3] Dutch Soc Adults & Children Inborn Error Metab VK, Zwolle, Netherlands

[4] Univ Groningen, Univ Med Ctr Groningen, Beatrix Childrens Hosp, Div Metab Dis, Groningen, Netherlands

来源：

ORPHANET JOURNAL OF RARE DISEASES | 2013年 / 8卷

关键词：

Phenylketonuria; PKU; Clinical pathway; OUTCOMES; LEAD; NEED;

D O I：

10.1186/1750-1172-8-37

中图分类号：

Q3 [遗传学];

学科分类号：

071007 ; 090102 ;

摘要：

Inborn errors of metabolism (IEMs) are known for their low prevalence and multidisciplinary care mostly founded on expert opinion. Clinical pathways are multidisciplinary tools to organise care which provide a clear route to the best care and improve communication. In 2010 the Dutch Society for Children and Adults with an Inborn Error of Metabolism (VKS) initiated development of clinical pathways for inborn errors of metabolism. In this letter to the editor we describe why it is warranted to develop clinical pathways for IEMs and shortly discuss the process of development for these pathways in the Netherlands.

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