Publication

Advancing interdisciplinary research in head and neck cancer through a multicenter longitudinal prospective cohort study: the NETherlands QUality of life and BIomedical Cohort (NET-QUBIC) data warehouse and biobank

Verdonck-de Leeuw, I. M., Jansen, F., Brakenhoff, R. H., Langendijk, J. A., Takes, R., Terhaard, C. H. J., de Jong, R. J. B., Smit, J. H. & Leemans, C. R., 5-Aug-2019, In : BMC Cancer. 19, 1, p. 765 13 p., 765.

Research output: Contribution to journalArticleAcademicpeer-review

APA

Verdonck-de Leeuw, I. M., Jansen, F., Brakenhoff, R. H., Langendijk, J. A., Takes, R., Terhaard, C. H. J., ... Leemans, C. R. (2019). Advancing interdisciplinary research in head and neck cancer through a multicenter longitudinal prospective cohort study: the NETherlands QUality of life and BIomedical Cohort (NET-QUBIC) data warehouse and biobank. BMC Cancer, 19(1), 765. [765]. https://doi.org/10.1186/s12885-019-5866-z

Author

Verdonck-de Leeuw, I M ; Jansen, F ; Brakenhoff, R H ; Langendijk, J A ; Takes, R ; Terhaard, C H J ; de Jong, R J Baatenburg ; Smit, J H ; Leemans, C R. / Advancing interdisciplinary research in head and neck cancer through a multicenter longitudinal prospective cohort study : the NETherlands QUality of life and BIomedical Cohort (NET-QUBIC) data warehouse and biobank. In: BMC Cancer. 2019 ; Vol. 19, No. 1. pp. 765.

Harvard

Verdonck-de Leeuw, IM, Jansen, F, Brakenhoff, RH, Langendijk, JA, Takes, R, Terhaard, CHJ, de Jong, RJB, Smit, JH & Leemans, CR 2019, 'Advancing interdisciplinary research in head and neck cancer through a multicenter longitudinal prospective cohort study: the NETherlands QUality of life and BIomedical Cohort (NET-QUBIC) data warehouse and biobank', BMC Cancer, vol. 19, no. 1, 765, pp. 765. https://doi.org/10.1186/s12885-019-5866-z

Standard

Advancing interdisciplinary research in head and neck cancer through a multicenter longitudinal prospective cohort study : the NETherlands QUality of life and BIomedical Cohort (NET-QUBIC) data warehouse and biobank. / Verdonck-de Leeuw, I M; Jansen, F; Brakenhoff, R H; Langendijk, J A; Takes, R; Terhaard, C H J; de Jong, R J Baatenburg; Smit, J H; Leemans, C R.

In: BMC Cancer, Vol. 19, No. 1, 765, 05.08.2019, p. 765.

Research output: Contribution to journalArticleAcademicpeer-review

Vancouver

Verdonck-de Leeuw IM, Jansen F, Brakenhoff RH, Langendijk JA, Takes R, Terhaard CHJ et al. Advancing interdisciplinary research in head and neck cancer through a multicenter longitudinal prospective cohort study: the NETherlands QUality of life and BIomedical Cohort (NET-QUBIC) data warehouse and biobank. BMC Cancer. 2019 Aug 5;19(1):765. 765. https://doi.org/10.1186/s12885-019-5866-z


BibTeX

@article{627afe8a8a614116b0bd3ea48cdb3da8,
title = "Advancing interdisciplinary research in head and neck cancer through a multicenter longitudinal prospective cohort study: the NETherlands QUality of life and BIomedical Cohort (NET-QUBIC) data warehouse and biobank",
abstract = "Background Worldwide, over 500,000 people are diagnosed with head and neck cancer each year, a disease with major impact on life expectancy and quality of life. The purpose of the Netherlands Quality of life and Biomedical Cohort study (NET-QUBIC) is to advance interdisciplinary research that aims to optimize diagnosis, treatment, and supportive care for head and neck cancer patients and their informal caregivers. Methods Using an extensive assessment protocol (electronic clinical record form, patient reported outcome measures and fieldwork (interviews and physical tests)), clinical data and data on quality of life, demographic and personal factors, psychosocial (depression, anxiety, fatigue, pain, sleep, mental adjustment to cancer, posttraumatic stress), physical (speech, swallowing, oral function, malnutrition, physical fitness, neurocognitive function, sexual function), lifestyle (physical activity, nutrition, smoking, alcohol, drugs), and social factors (social function, social support, work, health care use, and costs) are collected and stored in the data warehouse. A longitudinal biobank is built with tumor tissue, blood and blood components, saliva samples, and oral rinses. An infrastructure for fieldwork and laboratory protocols is established at all participating centers. All patients fill out patient reported outcome measures before treatment and at 3, 6, 12, 24, 36, 48, and 60 months follow-up. The interviews, physical tests and biological sample collection are at baseline and 6, 12, and 24 months follow-up. The protocol for caregivers includes blood sampling and oral rinses at baseline and a tailored list of questionnaires, administered at the same time points as the patients. In total, 739 HNC patients and 262 informal caregivers have been included in 5 out of the 8 HNC centers in the Netherlands. Discussion By granting access to researchers to the NET-QUBIC data warehouse and biobank, we enable new research lines in clinical (e.g. treatment optimization in elderly patients), biological (e.g. liquid biopsy analysis for relapse detection), health related quality of life (e.g. the impact of toxicity on quality of life), and interrelated research (e.g. health related quality of life in relation to biomarkers and survival).",
keywords = "Head and neck cancer, Survival, Health related quality of life, Symptoms, Toxicity, Data warehouse, Biobank, Cohort study, Caregivers, PREDICT SUBSEQUENT SURVIVAL, OROPHARYNGEAL CANCER, PROGNOSTIC-FACTOR, CARE, CAREGIVERS, CARCINOMA, PATIENT, SCORES, IMPACT, NEEDS",
author = "{Verdonck-de Leeuw}, {I M} and F Jansen and Brakenhoff, {R H} and Langendijk, {J A} and R Takes and Terhaard, {C H J} and {de Jong}, {R J Baatenburg} and Smit, {J H} and Leemans, {C R}",
year = "2019",
month = "8",
day = "5",
doi = "10.1186/s12885-019-5866-z",
language = "English",
volume = "19",
pages = "765",
journal = "BMC Cancer",
issn = "1471-2407",
publisher = "BMC",
number = "1",

}

RIS

TY - JOUR

T1 - Advancing interdisciplinary research in head and neck cancer through a multicenter longitudinal prospective cohort study

T2 - the NETherlands QUality of life and BIomedical Cohort (NET-QUBIC) data warehouse and biobank

AU - Verdonck-de Leeuw, I M

AU - Jansen, F

AU - Brakenhoff, R H

AU - Langendijk, J A

AU - Takes, R

AU - Terhaard, C H J

AU - de Jong, R J Baatenburg

AU - Smit, J H

AU - Leemans, C R

PY - 2019/8/5

Y1 - 2019/8/5

N2 - Background Worldwide, over 500,000 people are diagnosed with head and neck cancer each year, a disease with major impact on life expectancy and quality of life. The purpose of the Netherlands Quality of life and Biomedical Cohort study (NET-QUBIC) is to advance interdisciplinary research that aims to optimize diagnosis, treatment, and supportive care for head and neck cancer patients and their informal caregivers. Methods Using an extensive assessment protocol (electronic clinical record form, patient reported outcome measures and fieldwork (interviews and physical tests)), clinical data and data on quality of life, demographic and personal factors, psychosocial (depression, anxiety, fatigue, pain, sleep, mental adjustment to cancer, posttraumatic stress), physical (speech, swallowing, oral function, malnutrition, physical fitness, neurocognitive function, sexual function), lifestyle (physical activity, nutrition, smoking, alcohol, drugs), and social factors (social function, social support, work, health care use, and costs) are collected and stored in the data warehouse. A longitudinal biobank is built with tumor tissue, blood and blood components, saliva samples, and oral rinses. An infrastructure for fieldwork and laboratory protocols is established at all participating centers. All patients fill out patient reported outcome measures before treatment and at 3, 6, 12, 24, 36, 48, and 60 months follow-up. The interviews, physical tests and biological sample collection are at baseline and 6, 12, and 24 months follow-up. The protocol for caregivers includes blood sampling and oral rinses at baseline and a tailored list of questionnaires, administered at the same time points as the patients. In total, 739 HNC patients and 262 informal caregivers have been included in 5 out of the 8 HNC centers in the Netherlands. Discussion By granting access to researchers to the NET-QUBIC data warehouse and biobank, we enable new research lines in clinical (e.g. treatment optimization in elderly patients), biological (e.g. liquid biopsy analysis for relapse detection), health related quality of life (e.g. the impact of toxicity on quality of life), and interrelated research (e.g. health related quality of life in relation to biomarkers and survival).

AB - Background Worldwide, over 500,000 people are diagnosed with head and neck cancer each year, a disease with major impact on life expectancy and quality of life. The purpose of the Netherlands Quality of life and Biomedical Cohort study (NET-QUBIC) is to advance interdisciplinary research that aims to optimize diagnosis, treatment, and supportive care for head and neck cancer patients and their informal caregivers. Methods Using an extensive assessment protocol (electronic clinical record form, patient reported outcome measures and fieldwork (interviews and physical tests)), clinical data and data on quality of life, demographic and personal factors, psychosocial (depression, anxiety, fatigue, pain, sleep, mental adjustment to cancer, posttraumatic stress), physical (speech, swallowing, oral function, malnutrition, physical fitness, neurocognitive function, sexual function), lifestyle (physical activity, nutrition, smoking, alcohol, drugs), and social factors (social function, social support, work, health care use, and costs) are collected and stored in the data warehouse. A longitudinal biobank is built with tumor tissue, blood and blood components, saliva samples, and oral rinses. An infrastructure for fieldwork and laboratory protocols is established at all participating centers. All patients fill out patient reported outcome measures before treatment and at 3, 6, 12, 24, 36, 48, and 60 months follow-up. The interviews, physical tests and biological sample collection are at baseline and 6, 12, and 24 months follow-up. The protocol for caregivers includes blood sampling and oral rinses at baseline and a tailored list of questionnaires, administered at the same time points as the patients. In total, 739 HNC patients and 262 informal caregivers have been included in 5 out of the 8 HNC centers in the Netherlands. Discussion By granting access to researchers to the NET-QUBIC data warehouse and biobank, we enable new research lines in clinical (e.g. treatment optimization in elderly patients), biological (e.g. liquid biopsy analysis for relapse detection), health related quality of life (e.g. the impact of toxicity on quality of life), and interrelated research (e.g. health related quality of life in relation to biomarkers and survival).

KW - Head and neck cancer

KW - Survival

KW - Health related quality of life

KW - Symptoms

KW - Toxicity

KW - Data warehouse

KW - Biobank

KW - Cohort study

KW - Caregivers

KW - PREDICT SUBSEQUENT SURVIVAL

KW - OROPHARYNGEAL CANCER

KW - PROGNOSTIC-FACTOR

KW - CARE

KW - CAREGIVERS

KW - CARCINOMA

KW - PATIENT

KW - SCORES

KW - IMPACT

KW - NEEDS

U2 - 10.1186/s12885-019-5866-z

DO - 10.1186/s12885-019-5866-z

M3 - Article

VL - 19

SP - 765

JO - BMC Cancer

JF - BMC Cancer

SN - 1471-2407

IS - 1

M1 - 765

ER -

ID: 93509480