Infrastructure for rare cancer in the Netherlands: Towards a comprehensive platform for early detection and diagnosis of rare cancers (FORCE).
Authors: Pieterman Carolina R.C. , van den Tempel Nathalie , Dercksen Marcus W , Dreijerink Koen MA , Fehrmann Rudolf Stephan Nicolaas , de Herder Wouter W. , Hofland Johannes , Jalving Mathilde , Klümpen Heinz-Josef , Latten-Jansen Loes M , Linden Luc , Nieveen van Dijkum Els JM , de Ruiter Michiel B , Schuuring Ed , Schrieks Marga , Swertz Morris A , Tesselaar Margot ET , Veldman Dirk J , Valk Gerlof D , Walenkamp Anna Maria Elisabeth 
Published: June 2023

TPS1612

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.