<?xml version="1.0" encoding="UTF-8"?><xml><records><record><source-app name="Biblio" version="7.x">Drupal-Biblio</source-app><ref-type>17</ref-type><contributors><authors><author><style face="normal" font="default" size="100%">Domenica Taruscio</style></author><author><style face="normal" font="default" size="100%">Luciano Vittozzi</style></author><author><style face="normal" font="default" size="100%">Remy Choquet</style></author><author><style face="normal" font="default" size="100%">Ketil Heimdal</style></author><author><style face="normal" font="default" size="100%">Georgi Iskrov</style></author><author><style face="normal" font="default" size="100%">Yllka Kodra</style></author><author><style face="normal" font="default" size="100%">Paul Landais</style></author><author><style face="normal" font="default" size="100%">Manuel Posada</style></author><author><style face="normal" font="default" size="100%">Rumen Stefanov</style></author><author><style face="normal" font="default" size="100%">Christiane Steinmueller</style></author><author><style face="normal" font="default" size="100%">Elfriede Swinnen</style></author><author><style face="normal" font="default" size="100%">Herman Van Oyen</style></author></authors></contributors><titles><title><style face="normal" font="default" size="100%">National registries of rare diseases in Europe: an overview of the current situation and experiences.</style></title><secondary-title><style face="normal" font="default" size="100%">Public Health Genomics</style></secondary-title></titles><keywords><keyword><style  face="normal" font="default" size="100%">Databases, Factual</style></keyword><keyword><style  face="normal" font="default" size="100%">Delivery of Health Care</style></keyword><keyword><style  face="normal" font="default" size="100%">Europe</style></keyword><keyword><style  face="normal" font="default" size="100%">European Union</style></keyword><keyword><style  face="normal" font="default" size="100%">Humans</style></keyword><keyword><style  face="normal" font="default" size="100%">International Cooperation</style></keyword><keyword><style  face="normal" font="default" size="100%">Organizational Objectives</style></keyword><keyword><style  face="normal" font="default" size="100%">Rare diseases</style></keyword><keyword><style  face="normal" font="default" size="100%">REGISTRIES</style></keyword></keywords><dates><year><style  face="normal" font="default" size="100%">2015</style></year><pub-dates><date><style  face="normal" font="default" size="100%">2015</style></date></pub-dates></dates><volume><style face="normal" font="default" size="100%">18</style></volume><language><style face="normal" font="default" size="100%">eng</style></language><abstract><style face="normal" font="default" size="100%">&lt;p&gt;The European Union (EU) policy for healthcare requires the establishment of a system of European Reference Networks, union-wide information databases, and registries for rare diseases (RDs) based on shared criteria. In pursuing its goals, the 'Building Consensus and Synergies for the EU Registration of RD Patients in Europe' (EPIRARE) project convened a meeting with experts of the competent health authorities to discuss the role of national institutional RD patient registries in supporting EU patient registration and the room for international cooperation. With this aim, this paper comparatively analyses the current situation of national institutional RD registries in the EU.&lt;/p&gt;
</style></abstract><issue><style face="normal" font="default" size="100%">1</style></issue></record></records></xml>