Catalogue Biolink NL & Catalogue 2.0

Biolink NL

Catalogue

Biolink NL

&

Catalogue 2.0

Biolink NL

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

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 N

L

Biolink N

L

What level of catalogue do you mean?What level of catalogue do you mean?

Biolink N

L

Biolink NL

Which catalogues and why

Tool to setup record linkage projects: feasibilities/linkage

Linked subject data • Part of infrastructure• Feasibilities & selection of subjects • Not externally searchable

Level 5

Information & overview

Inventory data/biobanks• Linkage possibilities

Aggregated/key numbers • Rough feasibilities• Externally searchable

Level 2

Level 3

Biolink NL

What will the catalogues look like?

Level Catalogue Content

External access

Privacydemands

Gover-nance

Frequent updates

Remarks

2 Contents/linkage possibilities

Y 0 + +?

3 Key numbers Y + + ++ Fed by catalogue V

5 Linked subject level data

N +++ +++ ++ 1) Few variables per subject

2) Version 1: Mondriaan infrastructure

Biolink NL

• 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

Getting started with RP Catalogue 2.0

Biolink NL

• 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• Technisch faciliteren van de import (techneut naar techneut)

• User interactie ontwerp team (Morris & Chantal?)• Alternatieve ontwerpen (wizard vs filtering)• Toegangsbeperkingen en anonimiteit

• Harmonisatie team (Linda)• Afspraken maken over data items en hun codering / formats• Mapping van variabelen (protocollen en features) tussen bronnen

• Governance & sustainability team (Willem)• Business case voor catalogus• Wat voor informatie mag wel/niet gedeeld worden

• Afspraken over uitwisseling / samenwerking• Open source? Project place (NFU sponsor?)

Eerste concrete actiesEerste concrete acties

Biolink NL

• Pilot projecten– Inladen van Mondriaan level 3– Inladen van CTMM level 3

InteresseInteresse

Biolink NL

Biobank

Periodieke uitspoel van gepseudonimiseerde

microdata

Level 5 catalogus

aggregatie

Level 3 catalogus

Deelname aan level 3 en 5

Biolink NL

Biobank

aggregatie

Level 3 catalogus

Deelname aan alleen level 3

DB

Biolink NL

1. Wie beheert de catalogus

2. Samenwerking en inzet middelen Biolink NL in Catalogus 2.0

3. Inrichten efficiënte aansluit procedure

4. Kennis opbouw data

5. Impact minimalisatie voor biobanken

Langere termijn

1. Sustainability

2. Samenwerking inbedding NFU/BBMRI

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