Choquet Remy, Maaroufi Meriem, Fonjallaz Yannick, de Carrara Albane, Vandenbussche Pierre-Yves, Dhombres Ferdinand, Landais Paul
Banque Nationale de Données Maladies Rares, Hôpital Necker Enfants Malades, APHP, F-75015, Paris, France; INSERM, U1142, LIMICS, F-75006, Paris, France.
Banque Nationale de Données Maladies Rares, Hôpital Necker Enfants Malades, APHP, F-75015, Paris, France.
AMIA Annu Symp Proc. 2015 Nov 5;2015:434-40. eCollection 2015.
Characterizing a rare disease diagnosis for a given patient is often made through expert's networks. It is a complex task that could evolve over time depending on the natural history of the disease and the evolution of the scientific knowledge. Most rare diseases have genetic causes and recent improvements of sequencing techniques contribute to the discovery of many new diseases every year. Diagnosis coding in the rare disease field requires data from multiple knowledge bases to be aggregated in order to offer the clinician a global information space from possible diagnosis to clinical signs (phenotypes) and known genetic mutations (genotype). Nowadays, the major barrier to the coding activity is the lack of consolidation of such information scattered in different thesaurus such as Orphanet, OMIM or HPO. The Linking Open data for Rare Diseases (LORD) web portal we developed stands as the first attempt to fill this gap by offering an integrated view of 8,400 rare diseases linked to more than 14,500 signs and 3,270 genes. The application provides a browsing feature to navigate through the relationships between diseases, signs and genes, and some Application Programming Interfaces to help its integration in health information systems in routine.
对于特定患者的罕见病诊断通常是通过专家网络来进行的。这是一项复杂的任务,可能会随着疾病的自然史和科学知识的发展而演变。大多数罕见病都有遗传原因,测序技术的最新进展每年都有助于发现许多新疾病。罕见病领域的诊断编码需要汇总来自多个知识库的数据,以便为临床医生提供一个从可能的诊断到临床症状(表型)和已知基因突变(基因型)的全局信息空间。如今,编码活动的主要障碍是缺乏对分散在不同词库(如孤儿病数据库、在线人类孟德尔遗传数据库或人类表型本体)中的此类信息的整合。我们开发的罕见病链接开放数据(LORD)门户网站首次尝试填补这一空白,它提供了8400种罕见病与14500多种症状和3270个基因之间的综合视图。该应用程序提供了一个浏览功能,用于浏览疾病、症状和基因之间的关系,以及一些应用程序编程接口,以帮助其在日常健康信息系统中进行集成。