The nationwide HEreditary Breast and Ovarian cancer study the Netherlands (Hebon)

Hebon, initiated by NKI-AVL in 1997, is an active multidisciplinary collaboration of Clinical Genetics and laboratory departments of all University Medical Centers in the Netherlands and the Netherlands Cancer Institute, conducting a dynamic prospective cohort study for members of breast and ovarian cancer families. Currently 60,000 persons are enrolled. Hebon collects DNA test outcome results, self-reported risk factor data via questionnaires, pedigree data, mammography and MRI data, treatment data through linkage with the Netherlands Cancer Registry and Palga, vital status through linkage with the Dutch municipality register (BRP) and cause of death data via linkage with the Dutch Central Bureau of Statistics.

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Titel The nationwide HEreditary Breast and Ovarian cancer study the Netherlands (Hebon)
Omschrijving

Hebon, initiated by NKI-AVL in 1997, is an active multidisciplinary collaboration of Clinical Genetics and laboratory departments of all University Medical Centers in the Netherlands and the Netherlands Cancer Institute, conducting a dynamic prospective cohort study for members of breast and ovarian cancer families. Currently 60,000 persons are enrolled. Hebon collects DNA test outcome results, self-reported risk factor data via questionnaires, pedigree data, mammography and MRI data, treatment data through linkage with the Netherlands Cancer Registry and Palga, vital status through linkage with the Dutch municipality register (BRP) and cause of death data via linkage with the Dutch Central Bureau of Statistics.
Keywords
Contact points
Contact point 1
URI
Naam
Hebon study
Name (translations)
Email
hebon@nki.nl
Identifier
URL
    Publisher
    Publisher 1
    URI
    Naam
    Nederlands Kanker Instituut - Antoni van Leeuwenhoekziekenhuis
    Name (translations)
    Email
    repository@nki.nl
    URL
    https://www.nki.nl/
    Type
    Publisher note
    Publisher type
    Identifier
    https://ror.org/03xqtf034
    Creator
    Creator 1
    URI
    Naam
    Nederlands Kanker Instituut - Antoni van Leeuwenhoekziekenhuis
    Name (translations)
    Email
    repository@nki.nl
    URL
    https://www.nki.nl/
    Type
    Publisher note
    Publisher type
    Identifier
    https://ror.org/03xqtf034
    Landing page
    Release date
    Modification date
    In Series
      Versie
      Version notes
      Identifier https://www.hebon.nl
      Frequency
      Provenance
      Type
      Temporal coverage
      Temporal resolution
      Spatial coverage
      Spatial resolution in meters
      Access rights http://publications.europa.eu/resource/authority/access-right/NON_PUBLIC
      Other identifier
      Theme
      1. http://publications.europa.eu/resource/authority/data-theme/HEAL
      Taal
      1. http://id.loc.gov/vocabulary/iso639-1/en
      Documentation
      Conforms to
      Is referenced by
      Distribution
      1. https://fdp.healthdataspace.amsterdam/distribution/287318d7-34e9-456d-b6ac-6fbed2c77539
      Sample
      Analytics
      Applicable legislation
      1. http://data.europa.eu/eli/reg/2025/327/oj
      Has version
      Code values
      Coding system
      Purpose
      Health category
      Health theme
      Legal basis
      Minimum typical age
      Maximum typical age
      Number of records
      Number of records for unique individuals.
      Personal data
      Publisher note
      Publisher type
      Trusted Data Holder
      Population coverage
      Retention period
      Health data access body
      Qualified relation
      Provenance activity
      Qualified attribution
      Attribution 1
      Agent
      Agent 1
      URI
      Naam
      Marjanka K. Schmidt
      Name (translations)
      Email
      mk.schmidt@nki.nl
      URL
      https://www.nki.nl/research/find-a-researcher/groupleaders/marjanka-schmidt/
      Homepage
      Type
      Identifier
      https://orcid.org/0000-0002-2228-429X
      Rol
      https://standards.iso.org/iso/19115/resources/Codelists/gml/CI_RoleCode.xml#principalInvestigator
      Attribution 2
      Agent
      Agent 1
      URI
      Naam
      Hebon study
      Name (translations)
      Email
      hebon@nki.nl
      URL
      https://www.hebon.nl
      Homepage
      Type
      Identifier
      https://www.hebon.nl
      Rol
      https://standards.iso.org/iso/19115/resources/Codelists/gml/CI_RoleCode.xml#Originator
      Quality annotations
      URI https://fdp.healthdataspace.amsterdam/dataset/1bf9e2bb-ff03-4929-9504-eda398d6c3ad