Catalogue Biolink NL & Catalogue 2.0

1. Catalogue Biolink NL & Catalogue 2.0

2. Improve the access to biomaterials and data by setting up: A national infrastructure for linkage of biobanks to registries (including technical, governance, and ethical/legal aspects). A web based Portal including procedures for linkage and a central catalogue of linked biobanks/registries that can be searched for specific patient populations. The catalogue should contain minimal harmonized dataset and also informed consent information. Deliverables of Biolink NL

3. What level of catalogue do you mean? Biolink NL • Level 1: List of Biobank Cohorts • available biobank sample collections with a minimal set of properties such as ‘size’, ‘data topics’ and ‘material types’. • Level 2: + Data item dictionary • information on data items available in each cohort such as questionnaire questions, lab measurements, diagnoses or GWAS • Level 3: + Group level information (chunked) • aggregate information such as ‘number of available samples for high blood pressure cases’. • Level 4: + Individual level data per Item • complete set of (anonymised) data in a biobank for which most biobanks will have in-house database. • Level 5: + Identifiable data per Individual • services to link to data from other sources and registries such as the national cancer registry, through pseudonimization service. Biolink NL Biolink NL

4. Which catalogues and why Information & overview Level2 • Inventory data/biobanks • Linkage possibilities Level 3 • Aggregated/key numbers • Rough feasibilities • Externally searchable Tool to setup record linkage projects: feasibilities/linkage Level 5 • Linked subject data • Part of infrastructure • Feasibilities & selection of subjects • Not externally searchable

5. What will the catalogues look like?

6. Getting started with RP Catalogue 2.0 • Who does what • Programmer (Bart, 1.0 fte) • Coordinator and biobank liaison (David, 0.5 fte) • Standardization/bouwstenen, workflow, power user (Linda, 0.3 fte) • RP5 / Mondriaan integration and policies (Willem, 0.2 fte) • Integration PSI, CTMM, .... • What data to use • What biobanks are willing to share data in public domain • Ask biobanks that are in BBMRI-NL catalogue (David/Morris) • Ask studies in CTMM (Linda/David) • Ask PSI board (Linda, ...) • Other sources? (e.g. BBMRI-SE) • What data items to share

7. Eerste concrete acties • Aansluit team (David & Willem) • Willem neemt contact op met biobanks • Assistance in selectie en mapping van data items • Procedure voor level 2, 3, 4 en 5 data overdracht • Technischfaciliteren van de import (techneutnaartechneut) • User interactieontwerp team (Morris & Chantal?) • Alternatieveontwerpen (wizard vs filtering) • Toegangsbeperkingen en anonimiteit • Harmonisatie team (Linda) • Afsprakenmaken over data items en huncodering / formats • Mapping van variabelen (protocollen en features) tussenbronnen • Governance & sustainability team (Willem) • Business case voorcatalogus • Watvoorinformatie mag wel/nietgedeeldworden • Afspraken over uitwisseling / samenwerking • Open source? Project place (NFU sponsor?)

8. Interesse • Pilot projecten • Inladen van Mondriaan level 3 • Inladen van CTMM level 3

9. Deelname aan level 3 en 5 Biobank Periodieke uitspoel van gepseudonimiseerde microdata Level 5 catalogus aggregatie Level 3 catalogus

10. Deelname aan alleen level 3 Biobank DB aggregatie Level 3 catalogus

11. Uitdagingen • Wie beheert de catalogus • Samenwerking en inzet middelen Biolink NL in Catalogus 2.0 • Inrichten efficiënte aansluit procedure • Kennis opbouw data • Impact minimalisatie voor biobanken • Langere termijn • Sustainability • Samenwerking inbedding NFU/BBMRI