History: creation of a
center specializing in endometriosis
Why set up an endometriosis center?
The creation of expert, reference or specialized endometriosis centers has been seen as a necessity in several Western countries over the last ten years, to ensure better management of severe forms of the disease (1).
International expert centers
Since 2005, in Denmark (a country with a population of 5.7 million), only two expert centers, one in Aarhus (2) and the other in Copenhagen, have been authorized to treat patients with deep endometriosis (3).
In other countries, such as Italy and Brazil, a few centers have established themselves thanks to the large number of patients treated each year with severe forms of the disease (4-7).
These centers have experienced multidisciplinary teams and have rightly gained international recognition (2,4-7). Nevertheless, in most cases, the operation of these centers is not really based on a network of several establishments, while the Réunions de Concertation Pluridisciplinaires (RCP) almost exclusively involve doctors from the establishment hosting the expert team.
France's first endometriosis reference center
In France, the idea of more organized and hierarchical management of the disease has taken shape over the last decade, thanks to the joint action of doctors and patient associations, notably EndoFrance.
A pilot project, supported by the Rouendometriose association, the Rouen University Hospital and the EndoFrance association, has been submitted to local (Agence Régionale de Santé or ARS) and national (Ministry of Health) authorities in the form of a multi-site (public and private), multidisciplinary Endometriosis Reference Center.
The results of this experiment were recently presented in a publication available here.
Endometriosis CPPs
In 2016, the French Ministry of Health showed increased involvement in endometriosis (9), and also commissioned the Haute Autorité Santé to update the Recommendations for Clinical Practice on Endometriosis (RPC), in conjunction with the Collège National des Gynécologues et Obstétriciens Français (CNGOF) (10).
The Ministry announced the Normandy experiment and concluded that "all of this ongoing research and experimentation, together with future HAS recommendations, will enable us in 2017 to build a new model of care for women with endometriosis. This model will be built with healthcare professionals and patient associations." In addition, the CNGOF has taken up the issue of endometriosis expert centers, and set up a commission whose work was concluded at the end of 2017 (11,12).
However, in July 2018, without calling into question the value of the expert centers, but noting their saturation by the very large number of requests for care, the Ministry of Health put the emphasis on setting up endometriosis care networks, the aim of which would be to meet the needs of first-line diagnosis and care.
The missions, characteristics and operation of these networks have yet to be defined. Nevertheless, it soon became clear that only the Expert Centers had the capacity to organize these channels through their network of correspondents.
IFEM Endo endometriosis institute opens in Bordeaux in 2018
- Honorary Professor of Endometriosis Surgery at the University of Aarhus (2),
- Lecturer at the Master of Minimally Invasive Gynecology at the University of Bologna,
- Staff member of Verona's International School of Surgical Anatomy (ISSA)
- Doctor Honoris Causa from the University of Bucharest.
Conference "Endometriosis...when to refer to an expert center?"
New Aquitaine surgical referral center
The year 2021 saw the development of the National Strategy against Endometriosis, at the initiative of President Emmanuel Macron.
Eleven French doctors with expertise in endometriosis and representatives of patient associations were invited to reflect on 5 action plans:
- Research into endometriosis
- Diagnosis of endometriosis
- Training healthcare professionals in endometriosis
- Organizing care for endometriosis
- Informing the general public
Of these 11 experts, 2 were founding members of IFEMEndo: Dr Chanavaz-Lacheray and Prof Roman.
As healthcare professionals and researchers 100% committed to the field of endometriosis, the members of the IFEMEndo team welcome the initiative and commitment of President Emmanuel Macron and European Deputy Chrysoula Zacharopoulou. France was already one of the world's leading countries in endometriosis research and treatment, thanks in particular to its committed, world-renowned teams, who sometimes go far ahead of the others. This strategy can help us all move forward together.
In line with the recommendations contained in the Stratégie Nationale contre l'Endométriose, and with the support of the Agence régionale de Soins de la Nouvelle Aquitaine, the professionals of New Aquitaine formed the Association Filière Endométriose de la Nouvelle Aquitaine (AFENA) in 2021.
Starting in 2023, multidisciplinary endometriosis care centers have been certified in Nouvelle Aquitaine.
Among these centers, two have been accredited as referral centers for complex surgeries: our IFEMEndo center at the Clinique Tivoli-Ducos, and the Bordeaux University Hospital.
IFEMEndo international award
2023 saw the opening of the IDEMEndo-Middle East Clinic at Burjeel Medical City Hospital in Abu Dhabi, United Arab Emirates, as part of the Advanced Gynecological Institute.
The Abu Dhabi center operates in a similar way to the one in Bordeaux, and Pr Roman and Dr Merlot coordinate the local team, made up of Venus doctors previously training in Bordeaux.
Weekly multidisciplinary consultation meetings are held with the participation of French surgeons via videoconference.
IFEMEndo-Middle East Clinic aims to become the reference center for the management of endometriosis in the Middle East.
Bibliography :
- Ebert A.D. et al, on behalf of the Endometriosis Research Foundation, and the European Endometriosis League. Implementation of certified endometriosis centers: 5 year experience in German speaking Europe. Gynecol Obstet Invest 2013 ;76 :4-9
- Riiskjaer M, et al. Pelvic organ function before and after laparoscopic bowel resection for rectosigmoid endometriosis: a prospective, observational study. BJOG 2016;123:1360-7.
- D'Hooghe T, Forman A. European accreditation of endometriosis centers of expertise? Gynecol Obstet Invest. 2013;76:1-3.
- Ceccaroni M, et al. Nerve-sparing laparoscopic eradication of deep endometriosis with segmental rectal and parametrial resection: the Negrar method. A single-center, prospective, clinical trial. SurgEndosc. 2012;26:2029-45.
- Abrao MS, et al. Deep endometriosis infiltrating the recto-sigmoid: critical factors to consider before management. Hum Reprod Update 2015; 21: 329-39.
- Malzoni M, et al. Feasibility and Safety of Laparoscopic-Assisted Bowel Segmental Resection for Deep Infiltrating Endometriosis: A Retrospective Cohort Study With Description of Technique. J Minim Invasive Gynecol. 2016 May-Jun;23(4):512-25.
- Seracchioli R, et al. Long-term cyclic and continuous oral contraceptive therapy and endometrioma recurrence: a randomized controlled trial. Fertil Steril. 2010 Jan;93(1):52-6.
- Roman H, Chanavaz-Lacheray I, and the Rouendometriose team. The Rouen expert center for diagnosis and multidisciplinary management: a French pilot experience. Gynecol Obstet Fertil Senol 2018; 46 :563-9.
- Ministry of Social Affairs and Health. Women and Health, Roadmap 2016. http://solidarites-sante.gouv.fr/IMG/pdf/femmes_et_sante.pdf
- Recommendations for good practice, Management of endometriosis. Gynecol Obstet Fertil Senol 2018.
- Chanavaz-Lacheray I., et al. Definition of Endometriosis Expert Centers. Gynecology Obstetrics Fertility & Senology. Feb 2018
- Golfier F., Chanavaz-Lacheray I., et al The definition of Endometriosis Expert Centres. J Gynecol Obstet Hum Reprod, March 2018
- Roman H, Chanavaz-Lacheray I, Forestier D, et al. Immediate postoperative complications in a multidisciplinary surgical center exclusively dedicated to endometriosis: a series of 491 patients. Gynecol Obstet Fertil Senol. 2020;48(6):484-490. doi:10.1016/j.gofs.2020.03.009
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