[Patient registries for rare diseases in Germany: concept paper of the NAMSE strategy group].

In this report, the group takes into account developments at the national and international level in order to develop recommendations for national initiatives.In addition to this, the group reports on consent and implementation as well as on the adaptation of a minimal dataset for use in rare disease registries and mapping the used data elements and schemata in a metadata repository. This position paper was created by the strategy group together with additional authors. The paper reached a consensus within the strategy group and can be seen as a concept paper of the Rare Diseases Registry strategy group. PMID: 32424556 [PubMed - as supplied by publisher]
Source: Bundesgesundheitsblatt, Gesundheitsforschung, Gesundheitsschutz - Category: International Medicine & Public Health Authors: Tags: Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz Source Type: research