Infrastructure for rare cancer in the Netherlands: Towards a comprehensive platform for early detection and diagnosis of rare cancers (FORCE).

person Carolina R.C. Pieterman The Netherlands Cancer Institute Amsterdam/UMC Utrecht ENETS Centre of Excellence, Department of Endocrine Oncology, Utrecht, Netherlands info_outline Carolina R.C. Pieterman, Nathalie van den Tempel, Marcus W Dercksen, Koen MA Dreijerink, Rudolf Stephan Nicolaas Fehrmann, Wouter W. de Herder, Johannes Hofland, Mathilde Jalving, Heinz-Josef Klümpen, Loes M Latten-Jansen, Luc Linden, Els JM Nieveen van Dijkum, Michiel B de Ruiter, Ed Schuuring, Marga Schrieks, Morris A Swertz, Margot ET Tesselaar, Dirk J Veldman, Gerlof D Valk, Anna Maria Elisabeth Walenkamp

Authors person Carolina R.C. Pieterman The Netherlands Cancer Institute Amsterdam/UMC Utrecht ENETS Centre of Excellence, Department of Endocrine Oncology, Utrecht, Netherlands info_outline Carolina R.C. Pieterman, Nathalie van den Tempel, Marcus W Dercksen, Koen MA Dreijerink, Rudolf Stephan Nicolaas Fehrmann, Wouter W. de Herder, Johannes Hofland, Mathilde Jalving, Heinz-Josef Klümpen, Loes M Latten-Jansen, Luc Linden, Els JM Nieveen van Dijkum, Michiel B de Ruiter, Ed Schuuring, Marga Schrieks, Morris A Swertz, Margot ET Tesselaar, Dirk J Veldman, Gerlof D Valk, Anna Maria Elisabeth Walenkamp Organizations The Netherlands Cancer Institute Amsterdam/UMC Utrecht ENETS Centre of Excellence, Department of Endocrine Oncology, Utrecht, Netherlands, Department of Medical Oncology, ENETS Centre of Excellence, University Medical Center Groningen, Groningen, Netherlands, Department of Oncology, Máxima Medical Center, Veldhoven, Netherlands, Amsterdam UMC, Location VU University, Department of Endocrinology and Metabolism, ENETS Center of Excellence, Cancer Center Amsterdam, Amsterdam, Netherlands, Department of Medical Oncology, University Medical Center Groningen, Groningen, Netherlands, Department of Internal Medicine, Section of Endocrinology, ENETS Center of Excellence, Erasmus MC Cancer Institute, Rotterdam, Netherlands, Amsterdam UMC, University of Amsterdam, Department of Medical Oncology, ENETS Center of Excellence, Cancer Center Amsterdam, Amsterdam, Netherlands, Department of Internal Medicine, Division of Medical Oncology, GROW - School for Oncology and Developmental Biology, Maastricht University Medical Center, Maastricht, Netherlands, Maastricht University, MEMIC Center for Data and Information Management, Maastricht, Maastricht, Netherlands, Amsterdam UMC, University of Amsterdam, Department of Surgery, ENETS Center of Excellence, Cancer Center Amsterdam, Amsterdam, Netherlands, Dutch Federation of Cancer Patients Organizations, Nederlandse Federatie Van Kankerpatiëntenorganisaties, NFK, Utrecht, Netherlands, Department of Pathology and Medical Biology, University of Groningen and University Medical Centre Groningen, Groningen, Netherlands, Department of Genetics, University Medical Center Groningen, University of Groningen, Groningen, Netherlands, The Netherlands Cancer Institute Amsterdam/UMC Utrecht ENETS Centre of Excellence, Department of Gastrointestinal and Medical Oncology, Amsterdam, Netherlands, Maastricht University, MEMIC Center for Data and Information Management, Maastricht, Netherlands Abstract Disclosures Research Funding Other Foundation Koningin Wilhelmina Fonds (KWF, the Dutch cancer foundation) Background: One in five patients with cancer has a rare type of tumor. For these patients, randomized controlled trials are often infeasible and, compared to patients with a more common tumor, their prognosis is poor due to late or incorrect diagnosis and fewer available treatment options. Moreover, most patients with rare cancer do not benefit yet from recent developments in ultrasensitive profiling of circulating cell-free DNA (USccfDNA). In some more common cancers, USccfDNA has improved early primary detection, detection of minimal residual disease (MRD), and early recurrence. The information needed to apply USccfDNA in most rare cancers is lacking, which delays innovation of personalized treatments and deprives these patients of a chance for a better outcome. FORCE aims to improve treatment outcomes for patients with rare cancers by systematically collecting their clinical data, tumor tissue and peripheral blood components. Methods: Retrospectively and prospectively collected data are used to build a data warehouse that provides comprehensive insight into the long-term biology of a rare cancer. The data warehouse is visualized as a train. The locomotive represents the infrastructure, which uses web-based tools for FAIR, comprehensive, multidisciplinary, data collection, workflow support and storage. The built-in “Call-me-in” module enables anyone who has been diagnosed with a rare tumor to collaborate and contribute their data to FORCE under strict privacy regulations. Each train carriage represents the data concerning a coherent set of rare tumor types, reflecting the ten domains defined by European Reference Network (ERN) Rare Adult Solid Cancers (EURACAN). Neuroendocrine neoplasms (NEN, EURACAN domain 4) is the first carriage joined to the FORCE infrastructure and serves as a use-case for the FORCE infrastructure. Currently, the first patients are being included in the prospective multicenter clinical biobank that makes optimal use of existing (data) infrastructure. A legal joint data registry agreement has been developed to enable a shared clinical biobank with a federated structure, and facilitate sharing of data and samples among participating institutes. FORCE-NEN has also developed a governance structure for the carriage and its relation to the central FORCE infrastructure. Both documents will serve as an adaptable template for other carriages. FORCE is now available for further international collaboration. We established a unique infrastructure in the Netherlands that combines the collection of clinical data, tumor and peripheral blood components of patients with a rare tumor, starting with NEN. The FORCE infrastructure will enable studies to optimize early primary detection, detection of minimal residual disease (MRD), and early recurrence by USccfDNA assays and facilitate future clinical trials.