Gynocare cost action ca18117 “European network for gynaecological rare cancer research : from concept to cure”

Abstract

Introduction: Up to 50% of all gynecologic tumors can be classified as rare (incidence of < 6 per 100,000 women) and usually have a poor prognosis owing to delayed diagnosis and treatment. Contrary to other common solid tumors, the treatment of rare gynecologic tumors (RGT) is often based on retrospective studies, expert opinion or extrapolation from other tumor sites with similar histology, leading to difficulty in developing guidelines for clinical practice. Currently, gynecologic cancer research, due to distinct scientific and technological challenges, is lagging behind. Moreover, the overall efforts for addressing these challenges are fragmented across different European countries and indeed, worldwide. Aims: GYNOCARE is an EU funded programme that aims to address these challenges by creating a unique network between key stakeholders covering distinct RGT research areas ranging from concept to cure: basic research, biobanking, bridging with industry, and setting up the legal and regulatory requirements for international innovative clinical trials. Methods: To achieve these ambitious goals, GYNOCARE focuses on (1) capacity-building on rare gynaecological cancer by connecting high-quality scientific communities in various disciplines, existing networks, policy-makers, industrial partners, and patient organisations across Europe and beyond; (2) coordinating, and contributing to the development of a research roadmap dedicated to connect (innovative) basic research to (harmonised) biobanking to ‘smarter’ clinical trials; (3) the development of a platform for sharing best practices, including funding roadmap and legal/ethical requirements, in gynaecological cancers – aiming to advice policy-makers and other key stakeholders; and (4) providing (equal) networking opportunities for early-stage researchers, and other talented young professionals. Results: Over 50 members from 20 countries form part of the GYNOCARE Consortium. Conclusion: This COST Action is an effective tool in order to bring together different key stakeholders in the field of rare gynecologic cancer.