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

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
Name
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
Name
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=UMC%20Utrecht&resource=UMBRELLA
Name
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 2
URI
http://catalogue.hdsu.nl/catalogue-rdf/api/rdf/Agents/id=Alrijne%20Ziekenhuis%20Leiderdorp&resource=UMBRELLA
Name
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 3
URI
http://catalogue.hdsu.nl/catalogue-rdf/api/rdf/Agents/id=Ziekenhuis%20Groep%20Twente&resource=UMBRELLA
Name
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
Landing page https://www.umcutrecht.nl/nl/wetenschappelijk-onderzoek/umbrella
Release date
Modification date
Temporal start date
Temporal end date
In Series
    Version
    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=Overijssel
    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
    Language
    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.
    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