The EU Committee of Experts on Rare Diseases (EUCERD) finished its three-year mandate this June by adopting two sets of recommendations, on patient registration and data collection and indicators for national plans and strategies respectively. The first one gives advice concerning the establishment of registries and collection of data. It calls for the international operability of registries and use of appropriate coding systems to enable the necessary pooling of data for public health and research purposes. The second recommendation provides a list of 21 indicators which are intended to capture relevant data and information on the process of planning and implementing of these plans and strategies. These indicators would provide information notably to the European Commission on the implementation of the Council Recommendation on an Action in the field of Rare Diseases which encourages Member States to establish a national plan or strategy in the field by the end of 2013. These two and all other reports and recommendations elaborated by the EUCERD during the past three years are available on its official website.
373
previous post