GYNOCARE Update: Modern Strategies to Improve Diagnosis and Treatment of Rare Gynecologic Tumors­Current Challenges and Future Directions

More than 50% of all gynecologic tumors can be classified as rare (defined as an incidence of ≤6 per 100,000 women) and usually have a poor prognosis owing to delayed diagnosis and treatment. In contrast to almost all other common solid tumors, the treatment of rare gynecologic tumors (RGT) is often based on expert opinion, retrospective studies, 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. The GYNOCARE, COST Action CA18117 (European Network for Gynecological Rare Cancer Research) programme aims to address these challenges through the creation of a unique network between key stakeholders covering distinct domains from concept to cure: basic research on RGT, biobanking, bridging with industry, and setting up the legal and regulatory requirements for international innovative clinical trials. On this basis, members of this COST Action, (Working Group 1, "Basic and Translational Research on Rare Gynecological Cancer") have decided to focus their future efforts on the development of new approaches to improve the diagnosis and treatment of RGT. Here, we provide a brief overview of the current state-of-the-art and describe the goals of this COST Action and its future challenges with the aim to stimulate discussion and promote synergy across scientists engaged in the fight against this rare cancer worldwide.

"There's no kind of respect here" A qualitative study of racism and access to maternal health care among Romani women in the Balkans.

INTRODUCTION: Roma, the largest minority group in Europe, face widespread racism and health disadvantage. Using qualitative data from Serbia and Macedonia, our objective was to develop a conceptual framework showing how three levels of racism--personal, internalized, and institutional--affect access to maternal health care among Romani women. METHODS: Eight focus groups of Romani women aged 14-44 (n = 71), as well as in-depth semi-structured interviews with gynecologists (n = 8) and key informants from NGOs and state institutions (n = 11) were conducted on maternal health care seeking, experiences during care, and perceived health care discrimination. Transcripts were coded, and analyzed using a grounded theory approach. Themes were categorized into domains. RESULTS: Twenty-two emergent themes identified barriers that reflected how racism affects access to maternal health care. The domains into which the themes were classified were perceptions and interactions with health system, psychological factors, social environment and resources, lack of health system accountability, financial needs, and exclusion from education. CONCLUSIONS: The experiences of Romani women demonstrate psychosocial and structural pathways by which racism and discrimination affect access to prenatal and maternity care. Interventions to address maternal health inequalities should target barriers within all three levels of racism.