NETherlands QUality of life and Biomedical cohort studies In Cancer (NET-QUBIC)
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.
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.
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).
Dutch Cancer Society (Alpe d’HuZes foundation)
- Verdonck-de Leeuw IM, Jansen F, Brakenhoff RH, Langendijk JA, Takes R, Terhaard CHJ, Baatenburg de Jong RJ, Smit JH, Leemans CR. 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.
- Douma JAJ, Verdonck-de Leeuw IM, Leemans CR, Jansen F, Langendijk JA, Baatenburg de Jong RJ, Terhaard CHJ, Takes RP, Chinapaw MJ, Altenburg TM, Buffart LM. Demographic, clinical and lifestyle-related correlates of accelerometer assessed physical activity and fitness in newly diagnosed patients with head and neck cancer. Acta Oncol. 2019 Oct 12:1-9.
- Mirosevic S, Thewes B, van Herpen C, Kaanders J, Merkx T, Humphris G, Baatenburg de Jong RJ, Langendijk JA, Leemans CR, Terhaard CHJ, Verdonck-de Leeuw IM, Takes R, Prins J; NET-QUBIC Consortium. Prevalence and clinical and psychological correlates of high fear of cancer recurrence in patients newly diagnosed with head and neck cancer. Head Neck. 2019 Sep;41(9):3187-3200.
- Piai V, Prins JB, Verdonck-de Leeuw IM, Leemans CR, Terhaard CHJ, Langendijk JA, Baatenburg de Jong RJ, Smit JH, Takes RP, Kessels RPC. Assessment of Neurocognitive Impairment and Speech Functioning Before Head and Neck Cancer Treatment. JAMA Otolaryngol Head Neck Surg. 2019 Mar 1;145(3):251-257.
- Van Nieuwenhuizen AJ, Buffart LM, Smit JH, Brakenhoff RH, Braakhuis BJ, de Bree R, Leemans CR, Verdonck-de Leeuw IM. A comprehensive assessment protocol including patient reported outcomes, physical tests, and biological sampling in newly diagnosed patients with head and neck cancer: is it feasible? Support Care Cancer. 2014;22(12):3321-30.
For questions, please contact Prof. I.M. Verdonck – de Leeuw via [email protected]