A methodology for a minimum data set for rare diseases to support national centers of excellence for healthcare and research.

CONCLUSIONS: The French F-MDS-RD was defined through national consensus. It can foster better care coordination and facilitate determining rare disease patients' eligibility for research studies, trials, or cohorts. Since other countries will need to develop their own standards for rare disease data collection, they might benefit from the methods presented here.
PMID: 25038198 [PubMed - as supplied by publisher]

Source: Journal of the American Medical Informatics Association - July 18, 2014 Category: Information Technology Authors: Choquet R, Maaroufi M, de Carrara A, Messiaen C, Luigi E, Landais P Tags: J Am Med Inform Assoc Source Type: research