作者
Paul Landais, Claude Messiaen, Ana Rath, Loïc Le Mignot, Eric Dufour, Mohamed Ben Said, Jean-Philippe Jais, Laurent Toubiana, Geneviève Baujat, Eva Bourdon-Lanoy, Marion Gérard-Blanluet, Christine Bodemer, Rémi Salomon, Ségolène Aymé, Martine Le Merrer, Alain Verloes
发表日期
2010
图书
MEDINFO 2010
页码范围
481-485
出版商
IOS Press
简介
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 …
引用总数
201220132014201520162017201820192020202120222023202426823624421
学术搜索中的文章
P Landais, C Messiaen, A Rath, L Le Mignot, E Dufour… - MEDINFO 2010, 2010