Slide template for use in presentation

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Catalogue Biolink NL Catalogue 2.0
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Deliverables of 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.

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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
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Which catalogues and why
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Catalogue level 5
feasibilities
Privacy
Patient/data selection
Flexible/ usability
.....
Legal demands
Valid results
Preconditions
Requirements
.....
Data linkage
Demands Bio- databanks!
Catalogue Subject level
Semantic integration
Up-to-data
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What will the catalogues look like?
Level Catalogue Content External access Privacy demands 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 Few variables per subject 2) Version 1 Mondriaan infrastructure
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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

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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
• 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?)

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Interesse

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

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Deelname aan level 3 en 5
Biobank
Periodieke uitspoel van gepseudonimiseerde
microdata
Level 5 catalogus
aggregatie
Level 3 catalogus
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Deelname aan alleen level 3
Biobank
aggregatie
DB
Level 3 catalogus
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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

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Privacy level 5
Compliant with e.g. WBP and case law CBP
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Governance result of 2 years of Mondriaan
experience catalogue 3 and 5

• Sources set the limits
• Scientific use only
• Independent, non-profit governance
• Different sources have different limits
• Sometimes level V is less scary than level III
• Control ownership
• Whats in it for me?
• Catalogue design consequences
• Level 3 catalogue level vs source level
• Level 5
• No public access,
• No release of data without approval by a source
• Release of answers.
• Industry

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Mondriaan catalogue (level 5)

• In production September 2010
• Access approx 10 pers. (UMCU/UMCG/RUG)
• Semantic integration
• Compliant with privacy laws
• Established procedures on data-handling and
  ownership
• Data available in catalogue
• GP data 0,5 M subjects (Utrecht Almere)
• EPIC- NL (40K subject)
• IADB (0,5 M subjects Groningen)
• Psychiatric data provence of Utrecht

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Mondriaan catalogue (level 5)

• Data expected 2012-13
• SFK public pharmacy data of 14 M subjects
• Achmea (5 M subjects)
• UPOD
• Smart
• Vumc GP network
• LifeLines
• LINH

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Mondriaan Meta-catalogue
Researcher
Mondriaan
City/ region
Catalogue
Data exchange HDR-Mondriaan
Gronin- gen
Data delivery
Sneek
Zwolle
Almere
VUmc
Twente
Leiden
EPIC
Nijm- egen
SFK
Zeeland
Ehoven
Ehoven
S- Limburg
Researcher
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Proces data pseudonimisatie/ anonimisatie
data-upload naar Mondriaan
De TTP verzorgt de pseudonimisatie en koppeling
van data
Bron- pseudoniem
2) De TTP stuurt bronpseudoniemen naar de
client. Koppelingen zijn nog niet mogelijk met
deze pseudoniemen. Dit i.v.m. privacy.
Versleutelde NAW
1) NAW-gegevens worden versleuteld bij de
bron en naar TTP gestuurd. De medische data
worden niet naar de TTP gestuurd. .
DB
DB
Gepseudonimiseerde (medische) data van de bron
3) De client stuurt alleen de bronpseudoniemen
Medische data naar Mondriaan
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Catalogue on patient level be careful!
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Koppelen

• Custodix
• Kanskoppeling
• 3 stappen
• normalisatie inputgegevens hashing
• Blocking
• Matching
• Matching combinatie van fellegi-sunter
  algoritme(s) en scriptable matchers
• Matches non-matches
• Calibratie
• ZorgTTP
• Wel normalisatie hashing inputgegevens
• Geen koppeling, maar uniform versleutelde
  identifiers of combinaties daarvan