Usage NET-QUBIC data, release 4

To support scientific research, the Steering Committee of the NET-QUBIC Consortium decided to facilitate yearly data releases. In this fourth data release, data and samples of all 739 included patients and 262 caregivers collected up to 24 months follow-up are available.

The NET-QUBIC Data Warehouse and Biobank consists of longitudinal data of newly-diagnosed head and neck cancer patients and their informal caregivers. The primary objective of the NET-QUBIC-project is to describe the long term course of quality of life in newly-diagnosed head and neck cancer patients and their informal caregivers and to identify cancer-related, personal, biological, psycho-behavioural, physical, lifestyle-related, and social determinants of quality of life. The intent of the NET-QUBIC DataWarehouse and Biobank is to support all kinds of scientific research in head and neck cancer patients and their informal caregivers.

Research proposals

Available data and samples in the fourth data release

Baseline data and samples of all 739 patients, as well as 3-months follow-up data (n=544), and 6 months (n=606), 12 months (n=542) and 24 months (n=471) follow-up data and samples are available. Table 1 provides information on sex, age, tumor location, TNM stage, and treatment modality of these included patients. In addition, Table 2 provides information on the available samples and measurements.

Also, baseline data and samples of all 262 caregivers, as well as 3-months (n=193) and 6 months (n=170) follow-up data are available. Table 3 provides information on sex and age of the caregivers, and type of relation between patient-caregiver (e.g. love relation or sibling). In addition, Table 4 provides information on the available samples and measurements per time point.

Data and biomaterials not yet available in the fourth data release

The following data will not yet be released in this fourth data release, namely voice recordings, data on healthcare utilization, data derived from biobank samples (e.g. cytokines and cortisol levels) and data needed for the already approved NET-QUBIC (PhD) projects.

These projects include:

1. The course of health related quality of life in relation to survival (Amsterdam UMC, location VUmc, project leader IM Verdonck-de Leeuw)
2. Depression in head and neck cancer patients and the relation with survival (Amsterdam UMC, location VUmc, project leader IM Verdonck-de Leeuw),
3. Treatment optimization in elderly head and neck cancer patients (UMCG, project leader JA Langendijk),
4. Development and validation of predictive models for objectively and subjectively measured salivary, mastication, and swallowing function in relation to quality of life among patients treated for head and neck cancer (UMCU, project leader CHJ Terhaard),
5. Fear of recurrence in head and neck cancer patients (Radboudumc, project leaders RP Takes and JB Prins).
6. Sleep disturbances in newly diagnosed head and neck cancer patients (Vrije Universiteit Amsterdam, project leader IM Verdonck-de Leeuw).
7. Head and neck cancer long-term survivorship: Late effects, supportive care needs and healthcare utilization of survivors and their caregivers (AmsterdamUMC, location VUmc, project leader F Jansen)

For an overview of all running projects using NET-QUBIC data see appendix 1.

Procedure 
More information about the procedure can be found here.

Study procedures NET-QUBIC

For more information about Annex I, IV, V, VI and VII, click here. 

Time schedule

Between July 1 and September 30, 2020, applicants can submit their research proposal.

In October 2020 the NET-QUBIC steering committee will decide on the research proposal, and the applicant will be informed on the decision.

Questions?

For questions, please contact:
Prof Irma Verdonck-de Leeuw
data.netqubic@amsterdamumc.nl