Centralization of the management of gestational trophoblastic disease in Europe: from local centers to European Reference Networks

Gestational trophoblastic disease (GTD) encompasses a group of rare disorders ranging from pre-malignant to malignant conditions. Today, the management of GTD in Europe has evolved into a centralized approach which is crucial for the best outcomes. To investigate the centralized approach, we conducted a literature search on the PubMed/MEDLINE database and others such as SCOPUS, Google Scholar, Cochrane Library, January 2025. Additionally, we searched the official websites of European countries and the EU for information about European Reference Networks (ERNs) and national centers for GTD. We identified three phases in the centralization process of GTD management in Europe. The initial phase involved local hospitals and the development of the concept of centralized and specialized treatment for GTD. In the second phase, national centers for GTD were established. Finally, the creation of ERNs brought these national centers together. ERNs use advanced and multi-level tools of health communication. As conclusion, the current approach to managing GTD in Europe emphasizes the centralization of treatment and follow-up, with national centers and ERNs serving as the core components of this strategy. This approach may be an example of the best management of GTD for the world.

Rare diseases; Centralization of management; Gestational trophoblastic disease; European Reference Networks; Health communication

[1] Seckl MJ, Sebire NJ, Berkowitz RS. Gestational trophoblastic disease. The Lancet. 2010; 376: 717–729.

[2] Golfier F, Seckl MJ. From national to international collaboration in gestational trophoblastic disease: hurdles and possibilities. Gynecologic and Obstetric Investigation. 2024; 89: 254–258.

[3] European Commission. Public health, rare diseases and European Reference Networks. 2025. Available at: https://health.ec.europa.eu/european-reference-networks/rare-diseases_en (Accessed: 10 January 2025).

[4] EURACAN. Rare adult solid cancers. Female genital organs and placenta. 2024. Available at: https://euracan.eu/rare-adult-solid-cancers/female-genital-organs-placenta/ (Accessed: 10 January 2025).

[5] Stiller CA. Centralised treatment, entry to trials and survival. British Journal of Cancer. 1994; 70: 352–362.

[6] Brewer JI, Eckman TR, Dolkart RE, Torok EE, Webster A. Gestational trophoblastic disease. A comparative study of the results of therapy in patients with invasive mole and with choriocarcinoma. American Journal of Obstetrics & Gynecology. 1971; 109: 335–340.

[7] Golfier F, Raudrant D, Frappart L, Mathian B, Guastalla JP, Trillet-Lenoir V, et al. First epidemiological data from the French Trophoblastic Disease Reference Center. American Journal of Obstetrics & Gynecology. 2007; 196: 172.e1–e5.

[8] Kohorn EI. Worldwide survey of the results of treating gestational trophoblastic disease. The Journal of Reproductive Medicine. 2010; 59: 145–153.

[9] Freitas F, Braga A, Viggiano M, Velarde LGC, Maesta I, Uberti E, et al. Gestational trophoblastic neoplasia lethality among Brazilian women: a retrospective national cohort study. Gynecologic Oncology. 2020; 158: 452–459.

[10] Seckl MJ, Ghorani E. Progress to international harmonisation of care and future developments. Best Practice & Research Clinical Obstetrics & Gynaecology. 2021; 74: 159–167.

[11] Hancock BW, Nazir K, Everard JE. Persistent gestational trophoblastic neoplasia after partial hydatidiform mole: incidence and outcome. The Journal of Reproductive Medicine. 2006; 51: 764–766.

[12] Schoenen S, Delbecque K, Van Rompuy AS, Marbaix E, Noel JC, Delvenne P, et al. Importance of pathological review of gestational trophoblastic diseases: results of the Belgian Gestational Trophoblastic Diseases Registry. International Journal of Gynecological Cancer. 2022; 32: 740–745.

[13] Fehlmann A, Benkortbi K, Rosseel G, Meyer-Hamme U, Tille JC, Sloan-Bena F, et al. Gestational trophoblastic disease in Switzerland: retrospective study of the impact of a regional reference centre. Swiss Medical Weekly. 2021; 151: w20406.

[14] Baas IO, Westermann AM, You B, Bolze PA, Seckl M, Ghorani E. Immunotherapy for gestational trophoblastic neoplasia: a new paradigm. Gynecologic and Obstetric Investigation. 2024; 89: 230–238.

[15] Charing Cross Gestational Trophoblast Disease Service. Welcome. 2025. Available at: https://www.hmole-chorio.org.uk/ (Accessed: 10 January 2025).

[16] The Sheffield Trophoblastic Disease Centre. Screening and treatment forgestational trophoblastic tumours. 2025. Available at: https://stdc.sites.sheffield.ac.uk/ (Accessed: 10 January 2025).

[17] Orphanet. Expert centres and networks. 2025. Available at: https://www.orpha.net/en/expert-centres/networks (Accessed: 10 January 2025).

[18] EOTTD. Expert centers. 2025. Available at: https://eottd.org/gtd-centers.html (Accessed: 10 January 2025).

[19] Gulhan I. A unique e-health and telemedicine implementation: European Reference Networks for rare diseases. Journal of Public Health. 2020; 28: 223–225.

[20] European Commission. Public health, European health policy, overview. 2025. Available at: https://health.ec.europa.eu/eu-health-policy/overview_en (Accessed: 10 January 2025).

[21] European Union. Founding agreements. 2025. Available at: https://european-union.europa.eu/principles-countries-history/principles-and-values/founding-agreements_en (Accessed: 10 January 2025).

[22] Official Journal of the European Union (4.4.2011). Directive on patients’ rights in cross-border healthcare. 2011. Available at: https://eur-lex.europa.eu/LexUriServ/LexUriServ.do?uri=OJ:L:2011:088:0045:0065:en:PDF (Accessed: 10 January 2025).

[23] EURACAN. About EURACAN. 2024. Available at: https://euracan.eu/who-we-are/about-euracan/ (Accessed: 10 January 2025).