'Utrecht cohort for Multiple BReast cancer intErvention studies and Long-term evaluation' cohort

The prospective, multicenter ‘Utrecht cohort for Multiple BREast cancer intervention studies and Long-term evaluAtion’ (UMBRELLA) cohort, established in 2013, serves as an infrastructure for conducting randomized controlled trials to evaluate effectiveness of (innovative) cancer treatments and survivorship care for breast cancer patients and survivors. UMBRELLA includes patients with histologically proven invasive breast cancer or ductal carcinoma in situ (DCIS) referred for breast cancer treatment in multiple hospitals in the Netherlands.

All UMBRELLA cohort participants consent for the collection and use of their clinical data. In addition, cohort participants can also provide consent for the longitudinal collection and use of patient-reported outcomes up to 10 years after enrolment. Last, cohort participants are also asked to provide consent to be randomized into future cohort-based trials following the Trial within Cohorts design. When conducting a cohort-based trial, all UMBRELLA cohort participants are screened for eligibility. Cohort participants assigned to the intervention arm, are offered the intervention, whereas cohort participants assigned to the control arm are not informed about the intervention and remain unaware of the trial.

By combining clinical data with (long-term) patient-reported outcomes from a large prospective cohort of breast cancer patients and survivors, it is possible to effectively study a diversity of clinically relevant questions to gain further insights in the effects of breast cancer treatment and its impact on quality of life as well as to evaluate effectiveness of interventions within the breast cancer field.

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Titel 'Utrecht cohort for Multiple BReast cancer intErvention studies and Long-term evaluation' cohort
Omschrijving

The prospective, multicenter ‘Utrecht cohort for Multiple BREast cancer intervention studies and Long-term evaluAtion’ (UMBRELLA) cohort, established in 2013, serves as an infrastructure for conducting randomized controlled trials to evaluate effectiveness of (innovative) cancer treatments and survivorship care for breast cancer patients and survivors. UMBRELLA includes patients with histologically proven invasive breast cancer or ductal carcinoma in situ (DCIS) referred for breast cancer treatment in multiple hospitals in the Netherlands.

All UMBRELLA cohort participants consent for the collection and use of their clinical data. In addition, cohort participants can also provide consent for the longitudinal collection and use of patient-reported outcomes up to 10 years after enrolment. Last, cohort participants are also asked to provide consent to be randomized into future cohort-based trials following the Trial within Cohorts design. When conducting a cohort-based trial, all UMBRELLA cohort participants are screened for eligibility. Cohort participants assigned to the intervention arm, are offered the intervention, whereas cohort participants assigned to the control arm are not informed about the intervention and remain unaware of the trial.

By combining clinical data with (long-term) patient-reported outcomes from a large prospective cohort of breast cancer patients and survivors, it is possible to effectively study a diversity of clinically relevant questions to gain further insights in the effects of breast cancer treatment and its impact on quality of life as well as to evaluate effectiveness of interventions within the breast cancer field.
Keywords
Contact points
Contact point 1
URI
http://catalogue.hdsu.nl/catalogue-rdf/api/rdf/Contacts/firstName=Sofie&lastName=Gernaat&resource=UMBRELLA
Naam
Sofie Gernaat
Name (translations)
Email
s.a.m.gernaat-2@umcutrecht.nl
Identifier
URL
    Publisher
    Publisher 1
    URI
    http://catalogue.hdsu.nl/catalogue-rdf/api/rdf/Agents/id=UMC%20Utrecht&resource=UMBRELLA
    Naam
    University Medical Center Utrecht
    Name (translations)
    Email
    UMBRELLA_STUDY@umcutrecht.nl
    URL
    https://www.umcutrecht.nl
    Type
    Publisher note
    Publisher type
    Identifier
    https://ror.org/0575yy874
    Creator
    Creator 1
    URI
    http://catalogue.hdsu.nl/catalogue-rdf/api/rdf/Agents/id=Alrijne%20Ziekenhuis%20Leiderdorp&resource=UMBRELLA
    Naam
    Alrijne Ziekenhuis
    Name (translations)
    Email
    UMBRELLA_STUDY@umcutrecht.nl
    URL
    https://www.alrijne.nl/
    Type
    Publisher note
    Publisher type
    Identifier
    https://ror.org/017rd0q69
    Creator 2
    URI
    http://catalogue.hdsu.nl/catalogue-rdf/api/rdf/Agents/id=Ziekenhuis%20Groep%20Twente&resource=UMBRELLA
    Naam
    Ziekenhuis Groep Twente
    Name (translations)
    Email
    UMBRELLA_STUDY@umcutrecht.nl
    URL
    https://www.zgt.nl/
    Type
    Publisher note
    Publisher type
    Identifier
    https://ror.org/04grrp271
    Creator 3
    URI
    http://catalogue.hdsu.nl/catalogue-rdf/api/rdf/Agents/id=UMC%20Utrecht&resource=UMBRELLA
    Naam
    University Medical Center Utrecht
    Name (translations)
    Email
    UMBRELLA_STUDY@umcutrecht.nl
    URL
    https://www.umcutrecht.nl
    Type
    Publisher note
    Publisher type
    Identifier
    https://ror.org/0575yy874
    Landing page https://www.umcutrecht.nl/nl/wetenschappelijk-onderzoek/umbrella
    Release date
    Modification date
    In Series
      Versie
      Version notes
      Identifier https://doi.org/10.71739/wd5m-j766
      Frequency http://publications.europa.eu/resource/authority/frequency/AS_NEEDED
      Provenance

      All UMBRELLA cohort participants consent for the collection and use of their clinical data. In addition, cohort participants can also provide consent for the longitudinal collection and use of patient-reported outcomes up to 10 years after enrolment. Last, cohort participants are also asked to provide consent to be randomized into future cohort-based trials following the Trial within Cohorts design. When conducting a cohort-based trial, all UMBRELLA cohort participants are screened for eligibility. Cohort participants assigned to the intervention arm, are offered the intervention, whereas cohort participants assigned to the control arm are not informed about the intervention and remain unaware of the trial.
      Type
      Temporal coverage
      Temporal resolution
      Spatial coverage
      Spatial coverage 1
      URI
      http://catalogue.hdsu.nl/CatalogueOntologies/api/rdf/Regions/name=Zuid-Holland
      Label
      Geometry
      Bounding Box
      Centroid
      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
      Documentation
      Conforms to
      Is referenced by
      Distribution
      Sample
      Analytics
      Applicable legislation
      1. http://data.europa.eu/eli/reg/2022/868/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. 7700
      Personal data
      Publisher note
      Publisher type
      Trusted Data Holder
      Population coverage
      Retention period
      Health data access body
      Qualified relation
      Provenance activity
      Qualified attribution
      Quality annotations
      URI http://catalogue.hdsu.nl/catalogue-rdf/api/rdf/Resources/id=UMBRELLA