Prospects for research in haemophilia with real ‐world data—An analysis of German registry and secondary data

ConclusionRigorous observational analysis of German haemophilia RWD shows that there is potential to supplement current knowledge and begin to address selected policy goals. To improve the value of existing RWD, the following efforts are proposed: ethical, legal and methodological discussions on data linkage across different sources, formulation of transparent governance rules for data access, redefinition of the ICD‐coding, standardized collection of outcome data and implementation of incentives for treatment centres to improve data collection.

Source: Haemophilia - February 28, 2018 Category: Hematology Authors: D. Schopohl, C. Bidlingmaier, D. Herzig, R. Klamroth, K. Kurnik, D. Rublee, W. Schramm, L. Schwarzkopf, K. Berger Tags: ORIGINAL ARTICLE Source Type: research