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The SIR-FMD project is a partnership between the Department of Genetics and Reference Centre for Rare Vascular Diseases at the Georges Pompidou European Hospital in Paris and the Medical Informatics and Knowledge Engineering Laboratory of Inserm. Its aim is to use an ontological approach to implement an information system for the French Fibromuscular Dysplasia Registry. The existing data was dispersed in numerous databases, which had been created independently. These databases have different structures and contain data of diverse quality. The project aims to provide generic solutions for the management of the communication of medical data. The secondary objective is to demonstrate the applicability of these generic solutions in the field of rare diseases (RD) in an operational context. The construction of the French FMD registry was a multistep process. A secure platform has been available since the beginning of November 2013. The medical records of 471 patients from the initial dataset provided by the HEGP-Paris, France have been included, and are accessible from a secure user account. Users are organized into a collaborative group, and can access patient groups. Each electronic patient record contains more than 2,200 items. The problem of semantic interoperability has become one of the major challenges for the development of applications requiring the sharing and reuse of data. The information system component of the SIR-FMD project has a direct impact on the standardisation of coding of rare diseases and thereby contributes to the development of e-Health. [ABSTRACT FROM AUTHOR]

Rare diseases cover a group of conditions characterized by a low prevalence, affecting less than 1 in 2,000 people; 5000 to 7000 rare diseases have been currently identified in Europe. Most diseases do not have any curative treatment. They represent thus an important public health concern. CEMARA is based on a n-tier architecture. Its main objective is to collect continuous and complete records of patients with rare diseases, and their follow-up through a web-based Information System, and to analyse the epidemiological patterns. In France, 41 out of 131 labelled Reference Centres (RC) are sharing CEMARA. Presently 56,593 cases have been registered by more than 850 health care professionals belonging to 171 clinical sites. The national demand of care was explored in relation with the offer of care in order to reach an improved match. Within 2 years, CEMARA stimulated sharing a common platform, a common ontology with Orphanet and initiating new cohorts of rare diseases for improving patient care and research. [ABSTRACT FROM AUTHOR]

A Multi-Source Information System (MSIS), has been designed for the Renal Epidemiology and Information Network (REIN) dedicated to End-Stage Renal Disease (ESRD). MSIS aims at providing reliable follow-up data for ESRD patients. It is based on an n-tier architecture, made out of a universal client, a dynamic Web server connected to a production database and to a data warehouse. MSIS is operational since 2002 and progressively deployed in 9 regions in France. It includes 16,677 patients. We show that the analysis of MSIS web log files allows evaluating the use of the system and the workload in a public-health perspective. [ABSTRACT FROM AUTHOR]

A Web-based Geographic Information System (Web-GIS), the SIGNe (Système d'Information Géographique pour la Néphrologie), was designed for the Renal Epidemiology and Information Network (REIN) dedicated to End-Stage Renal Disease (ESRD). This Web-GIS was coupled to a data warehouse and embedded in an n-tier architecture designed as the Multi-Source Information System (MSIS). It allows to access views of ESRD concerning the epidemiology of the demand and the supply of care. It also provides maps matching the offer of care to the demand. It is presented with insights on the design and underlying technologies. It is dedicated to professionals and to public health care decision-makers in the domain of ESRD. [ABSTRACT FROM AUTHOR]

The control of the transmissible epidemics of diseases requires fast and effective tools for data acquisition, analysis, and information feedback to the actors of health like to general public. We present a tool for the fast creation of platforms of monitoring on Internet allowing the collection and the analysis in real time of the epidemic data of any origin with the dynamic and interactive cartographic representation. A Web-based Geographic Information System (Web-GIS) has been designed for communicable diseases monitoring. The Web-GIS was coupled to a data warehouse and embedded in an n-tier architecture designed as the Multi-Source Information System. It allows to access views of communicable diseases. Thus it is a useful tool for supporting health care decision-making for communicable diseases. This tool is based on the 20 years experiment of the Network Sentinels, with the daily participation of the general practitioners. [ABSTRACT FROM AUTHOR]

Adenoviral conjunctivitis is extremely contagious, causes a form of conjunctivitis. Therefore, it is important to identify patients who suffer from adenoviral conjunctivitis, as early as possible, in order to contain the disease. We present the 6 independent but interoperable platforms developed for the purpose of a large European epidemiologic study (ADVISE), which has been implemented independently in France, Germany, Spain, Italy and the UK. ADVISE is a noninterventional, observational epidemiology study with the objectives of assessing clinical characteristics and incidence of adenovirus conjunctivitis. One of the challenges faced in developing this network of European epidemiology platforms has been the multilingual context. Actually, we have established independent platforms fully dedicated to each of the participating countries. Similar protocols have been submitted across these countries, allowing individual and pooled analyses of the data. A standardized questionnaire is used to collect patient ocular medical history. The electronic questionnaire contains 151 items with automatic coherence control. The first platform ADVISE was set up in France. Development, evaluation and validation of this platform were carried out between January and July 2013. The Medical Informatics and Knowledge Engineering Laboratory (LIMICS), proposes through this project, a tool that allows the installation and application of epidemiologic monitoring in any part of the world. [ABSTRACT FROM AUTHOR]

Epidemiological studies are necessary to take public health decisions. Their relevance depends on the quality of data. Doctors in continuous care collect a big amount of data that can be used for epidemiological purpose, but spatial data may be dirty; based on city names, the localization is imprecise, even more if it is misspelled. The only way to identify a city without ambiguity is to use its identifier, which can be retrieved by cleansing geographical textual data. In France, cities are organized in administrative zones called departments and some city names are shared by several cities in several departments. The clear identification of the department and the city name allows to deduce the city unique identifier and to make some spatial analysis such as epidemiological studies. In this paper, we propose a method to cleanse such data, using several steps. After having standardized the text to cleanse, we use the Levenshtein distance to generate a first set of propositions. Finally, the propositions are filtered, by removing the less likely candidates, so that it remains only one, which becomes the chosen city. Tested on a dataset of 9818 entries, we obtained 89.1% of concordance, whereas the standard Levenshtein distance obtained 70.5%. This demonstrates that our method has better results. [ABSTRACT FROM AUTHOR]