On 15 September 2015, BBMRI-NL presented its Health Registry Linkage Code. The Code establishes a mechanism for joint review by medical-ethical review boards of researchers’ requests to link their data across multiple registries and biobanks. Until now, such requests are dealt with individually and differently by each of the pertinent review boards, causing considerable delay, confusion and inconsistent if not conflicting assessments, even though the statutory requirements used for such evaluation are the same.
The Scientific Board of the LifeLines Population Biobank and the Perinatal Registry for the Netherlands were the first two review boards to sign the code. Others are set to follow, since the initiative was worked out together with twelve Dutch medical-ethical evaluation committees. Obviously, the Code could serve as a model for joint review of access requests to BBMRI-ERIC resources.