International audienceBACKGROUND:Although rare disease patients make up approximately 6-8% of all patients in Europe, it is often difficult to find the necessary expertise for diagnosis and care and the patient numbers needed for rare disease research. The second French National Plan for Rare Diseases highlighted the necessity for better care coordination and epidemiology for rare diseases. A clinical data standard for normalization and exchange of rare disease patient data was proposed. The original methodology used to build the French national minimum data set (F-MDS-RD) common to the 131 expert rare disease centers is presented.METHODS:To encourage consensus at a national level for homogeneous data collection at the point of care for rar...
Rare diseases (RD) patient registries are powerful instruments that help develop clinical research, ...
Rare diseases (RD) patient registries are powerful instruments that help develop clinical research, ...
International audienceBackground : In France, the Ministry of Health has implemented a comprehensive...
International audienceBACKGROUND:Although rare disease patients make up approximately 6-8% of all pa...
A timely diagnosis is a critical step to ensure a proper access to expert clinical management for pa...
Having codes for each and every rare disease (RD) would help European and national health authoritie...
In 2009 the European Commission asked the Member States to develop a strategy to improve the care of...
International audienceBackground: The relevance of registries as a key component for developing clin...
Rare diseases (RD) patient registries are powerful instruments that help develop clinical research, ...
Rare diseases (RD) patient registries are powerful instruments that help develop clinical research, ...
International audienceBackground : In France, the Ministry of Health has implemented a comprehensive...
International audienceBACKGROUND:Although rare disease patients make up approximately 6-8% of all pa...
A timely diagnosis is a critical step to ensure a proper access to expert clinical management for pa...
Having codes for each and every rare disease (RD) would help European and national health authoritie...
In 2009 the European Commission asked the Member States to develop a strategy to improve the care of...
International audienceBackground: The relevance of registries as a key component for developing clin...
Rare diseases (RD) patient registries are powerful instruments that help develop clinical research, ...
Rare diseases (RD) patient registries are powerful instruments that help develop clinical research, ...
International audienceBackground : In France, the Ministry of Health has implemented a comprehensive...