%0 Journal Article
%T RD-RAP: beyond rare disease patient registries, devising a comprehensive data and analytic framework
%A James M. McGree
%A Matthew I. Bellgard
%A Tom Snelling
%J Archive of "Orphanet Journal of Rare Diseases".
%D 2019
%R 10.1186/s13023-019-1139-9
%X Conceptual Framework of the proposed Rare Disease Registry and Analytics Platform (RD-RAP
%K Rare disease
%K Patient registries
%K Base line data
%K Clinical decision making
%K Health outcomes
%K Analytics
%U https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6626403/