UNCAN-Connect

OncoLifeS

Oncology Life Study

Description

We have established a hospital-based data-biobank, entitled OncoLifeS (Oncological Life Study: Living well as a cancer survivor) to link routinely collected clinical data with preserved biological specimens and quality of life assessments. The OncoLifeS data-biobank has been designed to facilitate cancer research by providing clear phenotypic and genotypic data in a clinical context. Observational study involves collecting routine clinical data about carefully selected patient groups, and this can be combined with genetics and omics data from biological specimens. Indeed, understanding cancer heterogeneity, its temporal evolution over time, and the outcomes of guided treatment depend on accurate data about patient characteristics and their clinical management. Linking these routine clinical data to preserved biological specimens can then enable reproducible research capable of discovering biomarkers of cancer and/or treatment response, evaluating personalized treatment approaches, and increasing patient awareness. Including quality of life assessments may provide relevant information on how cancer and its treatment affects the subjective well-being of patients.

General Design

Type
Cohort study
Data collection type
Retrospective, Prospective
Design
Longitudinal
Start/End data collection
2014 (ongoing)
Design paper
The OncoLifeS data-biobank for oncology: a comprehensive repository of clinical data, biological samples, and the patient's perspective
PID
https://doi.org/10.34760/5f5b7ff62dd52

Population

Countries
Netherlands (the)
Number of participants
10000
Number of participants with samples
6000
Population age groups
Adult (18+ years)
Main medical condition
  • II Neoplasms

Organisations

Lead organisations
Additional organisations

Contributors

  • prof. dr.  G.H. (Truuske) de BockUniversity Medical Center Groningeng.h.de.bock@umcg.nl

    Principal Investigator

  • Janny NagelUniversity Medical Center Groningenj.nagel@umcg.nl

    Primary contact

Available Data & Samples

Data categories

  • Biological samples
  • Survey data
  • Medical records

Sample categories

  • Blood
  • Fluids and Secretions
  • Genetic material
  • Tissue (FFPE)
  • Tissue (Frozen)

Areas of information

  • Socio-demographic and economic characteristics
  • Lifestyle and behaviours
  • Medication and supplements
  • Health and community care services utilization
  • Death
  • Laboratory measures
  • Preschool, school and work life

Subpopulations

List of subpopulations for this resource
No results for current selection

Collection events

List of collection events defined for this resource
No results for current selection

Networks

Part of networks

  • INTEGRATE Large Medical Cohorts

  • Decentralised Collaborative Network for Advancing Cancer Research and Innovation

Publications

The OncoLifeS data-biobank for oncology: a comprehensive repository of clinical data, biological samples, and the patient's perspective

Access conditions

Interested stakeholders can submit a research proposal OncoLifeS the coordinator of the OncoLifeS data-biobank and the involved tumor working group. The OncoLifeS scientific advisory board, which comprises representatives of each participating tumor working group, will then review the proposal. This board then advises the OncoLifeS steering committee on whether to approve requests for the use of clinical data and/or biomaterials. If approved, the project coordinator retrieves anonymized data or biomaterials from the OncoLifeS database or biobank. A protected workspace is provided for access to and analysis of data regarding cancer biomarkers, treatment response, and treatment effects for different patient outcomes, including quality of life. This can also be used to give health care providers performance-related feedback and to monitor oncological care quality. If biomaterials are requested, agreements are made on how, where, and by whom they will be analyzed, and results from these analyses will be added to the workspace. On this workstation, the researcher will have access to the set of requested data. In addition, software is provided for data analysis.
Data access conditions
  • health or medical or biomedical research
  • disease specific research
Data use conditions
  • research specific restrictions
  • publication required
  • collaboration required
  • ethics approval required
  • project specific restriction
  • return to database or resource
Release type
Closed dataset
Release description
The data is handed over following the requested variables. There is the possibility to add data to the OncoLifeS data.
Linkage options
There is consent for linking with various databases and registers, for example general practitioners, pharmacy, Palga, Lifelines, IKNL.

Documentation

OncoLifeS Template Study Protocol

Created with MOLGENIS