Anouk Jochems1, Maartje G Schouwenburg1, Brenda Leeneman2, Margreet G Franken2, Alfons J M van den Eertwegh3, John B A G Haanen4, Hans Gelderblom1, Carin A Uyl-de Groot2, Maureen J B Aarts5, Franchette W P J van den Berkmortel6, Willeke A M Blokx7, Mathilde C Cardous-Ubbink8, Gerard Groenewegen9, Jan Willem B de Groot10, Geke A P Hospers11, Ellen Kapiteijn1, Rutger H Koornstra12, Wim H Kruit13, Marieke W Louwman8, Djura Piersma14, Rozemarijn S van Rijn15, Albert J Ten Tije16, Gerard Vreugdenhil17, Michel W J M Wouters18, Jacobus J M van der Hoeven19. 1. Department of Medical Oncology, Leiden University Medical Centre, Albinusdreef 2, 2333 ZA, Leiden, The Netherlands. 2. Institute for Medical Technology Assessment, Erasmus University, Burgemeester Oudlaan 50, 3062 PA, Rotterdam, The Netherlands. 3. Department of Medical Oncology, VU University Medical Centre, De Boelelaan 1118, 1081 HZ, Amsterdam, The Netherlands. 4. Department of Medical Oncology, Netherlands Cancer Institute - Antoni van Leeuwenhoek hospital, Plesmanlaan 121, 1066 CX, Amsterdam, The Netherlands. 5. Department of Medical Oncology, Maastricht University Medical Centre, P. Debyelaan 25, 6229 HX, Maastricht, The Netherlands. 6. Department of Internal Medicine, Zuyderland Medical Centre Heerlen-Sittard, Henri Dunantstraat 5, 6419 PC, Heerlen, The Netherlands. 7. Department of Pathology, Radboud University Medical Centre, Geert Grooteplein Zuid 10, 6525 GA, Nijmegen, The Netherlands. 8. Netherlands Comprehensive Cancer Organisation, Godebaldkwartier 419, 3511 DT, Utrecht, The Netherlands. 9. Department of Medical Oncology, University Medical Centre Utrecht, Heidelberglaan 100, 3582, CX, Utrecht, The Netherlands. 10. Department of Medical Oncology, Isala, Dokter van Heesweg 2, 8025 AB, Zwolle, The Netherlands. 11. Department of Medical Oncology, University Medical Centre Groningen, Hanzeplein 1, 9713 GZ, Groningen, The Netherlands. 12. Department of Medical Oncology, Radboud University Medical Centre, Geert Grooteplein Zuid 10, 6525 GA, Nijmegen, The Netherlands. 13. Department of Medical Oncology, Erasmus MC Cancer Institute, 's-Gravendijkwal 230, 3015 CE, Rotterdam, The Netherlands. 14. Department of Internal Medicine, Medisch Spectrum Twente, Koningsplein 1, 7512 KZ, Enschede, The Netherlands. 15. Department of Internal Medicine, Medical Centre Leeuwarden, Henri Dunantweg 2, 8934 AD, Leeuwarden, The Netherlands. 16. Department of Internal Medicine, Amphia Hospital, Molengracht 21, 4818 CK, Breda, The Netherlands. 17. Department of Internal Medicine, Maxima Medical Centre, De Run 4600, 5504 DB, Eindhoven, The Netherlands. 18. Department of Surgical Oncology, Netherlands Cancer Institute - Antoni van Leeuwenhoek hospital, Plesmanlaan 121, 1066 CX, Amsterdam, The Netherlands. 19. Department of Medical Oncology, Leiden University Medical Centre, Albinusdreef 2, 2333 ZA, Leiden, The Netherlands. Electronic address: J.J.M.van_der_Hoeven@lumc.nl.
Abstract
BACKGROUND: In recent years, the treatment of metastatic melanoma has changed dramatically due to the development of immune checkpoint and mitogen-activated protein (MAP) kinase inhibitors. A population-based registry, the Dutch Melanoma Treatment Registry (DMTR), was set up in July 2013 to assure the safety and quality of melanoma care in the Netherlands. This article describes the design and objectives of the DMTR and presents some results of the first 2 years of registration. METHODS: The DMTR documents detailed information on all Dutch patients with unresectable stage IIIc or IV melanoma. This includes tumour and patient characteristics, treatment patterns, clinical outcomes, quality of life, healthcare utilisation, informal care and productivity losses. These data are used for clinical auditing, increasing the transparency of melanoma care, providing insights into real-world cost-effectiveness and creating a platform for research. RESULTS: Within 1 year, all melanoma centres were participating in the DMTR. The quality performance indicators demonstrated that the BRAF inhibitors and ipilimumab have been safely introduced in the Netherlands with toxicity rates that were consistent with the phase III trials conducted. The median overall survival of patients treated with systemic therapy was 10.1 months (95% confidence interval [CI] 9.1-11.1) in the first registration year and 12.7 months (95% CI 11.6-13.7) in the second year. CONCLUSION: The DMTR is the first comprehensive multipurpose nationwide registry and its collaboration with all stakeholders involved in melanoma care reflects an integrative view of cancer management. In future, the DMTR will provide insights into challenging questions regarding the definition of possible subsets of patients who benefit most from the new drugs.
BACKGROUND: In recent years, the treatment of metastatic melanoma has changed dramatically due to the development of immune checkpoint and mitogen-activated protein (MAP) kinase inhibitors. A population-based registry, the Dutch Melanoma Treatment Registry (DMTR), was set up in July 2013 to assure the safety and quality of melanoma care in the Netherlands. This article describes the design and objectives of the DMTR and presents some results of the first 2 years of registration. METHODS: The DMTR documents detailed information on all Dutch patients with unresectable stage IIIc or IV melanoma. This includes tumour and patient characteristics, treatment patterns, clinical outcomes, quality of life, healthcare utilisation, informal care and productivity losses. These data are used for clinical auditing, increasing the transparency of melanoma care, providing insights into real-world cost-effectiveness and creating a platform for research. RESULTS: Within 1 year, all melanoma centres were participating in the DMTR. The quality performance indicators demonstrated that the BRAF inhibitors and ipilimumab have been safely introduced in the Netherlands with toxicity rates that were consistent with the phase III trials conducted. The median overall survival of patients treated with systemic therapy was 10.1 months (95% confidence interval [CI] 9.1-11.1) in the first registration year and 12.7 months (95% CI 11.6-13.7) in the second year. CONCLUSION: The DMTR is the first comprehensive multipurpose nationwide registry and its collaboration with all stakeholders involved in melanoma care reflects an integrative view of cancer management. In future, the DMTR will provide insights into challenging questions regarding the definition of possible subsets of patients who benefit most from the new drugs.
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