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2022-RA-883-ESGO Rare Cancers in Gynecologic Oncology, ENGOT initiative for a European Registry
  1. Lorenzo Ceppi1,
  2. Alice Bergamini2,
  3. Elena Biagioli3,
  4. Olesya Solheim4,
  5. Antonio González-Martín5,
  6. Nelleke Ottevanger6,
  7. Els van Nieuwenhuysen7,
  8. Annette Hasenburg8,
  9. Karen Cadoo9,
  10. Elena Ioana Braicu10,
  11. Marcia Hall11,
  12. Dirk Bauerschlag12,
  13. Stefanie Aust13,
  14. Ross Glasspool14,
  15. Christianne Lok15,
  16. Jacob Korach16,
  17. David Cibula17,
  18. Sandro Pignata18,
  19. Isabel Ray-Coquard19,
  20. ENGOT Rare Tumors Group
  1. 1Obstetrics and Gynecology, Grande Ospedale Metropolitano Niguarda, MaNGO, Milan, Italy
  2. 2San Raffaele Hospital, MITO, Milan, Italy
  3. 3Mario Negri Institute, MaNGO, Milan, Italy
  4. 4Department of gynecological oncology, Norwegian Radiumhospital, Oslo University Hospital, NSGO, Oslo, Norway
  5. 5Clinica Universidad de Navarra, GEICO, Madrid, Spain
  6. 6EORTC Gynaecological Cancer Group, EORTC Gynaecological Cancer Group, Netherlands
  7. 7Gynaecologic Oncology, BGOG, Leuven, Belgium
  8. 8Clinic for Women’s Health, Department of Gynecology and Obstetrics, Medical Center Johannes Gutenberg University, AGO, Mainz, Germany
  9. 9St. James’s Hospital Dublin, Trinity St. James’s Cancer Institute, Cancer Trials Ireland, Dublin, Ireland
  10. 10Charité Universitätsmedizin Berlin, Berlin, NOGGO, Germany
  12. 12University Medical Center Schleswig-Holstein, AGO, Kiel, Germany
  13. 13Medical University of Vienna, Department of Obstetrics and Gynecology, Comprehensive Cancer Center, A-AGO, Vien, Austria
  14. 14Beatson West of Scotland Cancer Centre and Institute of Cancer Sciences, University of Glasgow, SGCTG, Glasgow, UK
  15. 15Department of gynecological oncology The Netherlands Cancer Institute, Antoni van Leeuwenhoek hospital, DGOG, Amsterdam, Netherlands
  16. 16Sheba Medical Center, Sackler School of Medicine, ISGO, Tel Aviv, Israel
  17. 17Department of Obstetrics and Gynecology, General University Hospital in Prague, First Faculty of Medicine, Charles University, CEEGOG, Prague, Czech Republic
  18. 18Department of Urology and Gynecology, Istituto Nazionale Tumori IRCCS Fondazione Pascale, MITO, Naples, Italy
  19. 19Centre Leon Bérard, Laboratoire RESHAPE U1290, Université Claude Bernard, GINECO, Lyon, France


Introduction/Background Management of rare cancers is challenging due to limited data, experience, low referral rates to oncological centers, and the fact that most treatments can only be based on experts’ opinions. Many gynecologic malignancies are considered rare diseases due to their low incidence. The European Commission has highlighted the need for treatment standardization in rare cancers, suggesting the creation of international networks and registries. Our purpose is to create an international European registry for the collection of data on rare gynecologic cancers.

Methodology This is a multi-center, international, retrospective, and prospective observational study collecting data of patients with rare gynecological cancers in centers among the European Network of Gynecological Oncological Trial Group (ENGOT). In its initial development, the study includes patients with malignant germ cell tumors, sex-cord stromal tumors, and low-grade serous tumors of the ovary, and can be expanded to other rare gynecological cancers. The aim is to collect complete clinical, surgical, and pathology data. The follow-up of patients will continue for up to 20 years. REDCap (Research Electronic Data Capture) web application will be used for data collection. A survey was conducted in order to assess interests and issues among the representatives of each ENGOT collaborative group. Periodical meetings were set up in order to update the ENGOT rare tumor working group on database development and share critical points.

Results The survey showed an interest in adopting the database in 94.4% of responders. The database has been developed, revised by a reviewers committee, and shared for data entry.

Conclusion National collaborative groups will participate independently in setting up a REDCap-based database with the same database structure. A central ENGOT coordination will ensure the appropriate data entry and registry management for future data analysis. This project will allow improving the knowledge of these rare cancers in Europe.

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