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The IFEMENDO cohort: understanding to improve care


In endometriosis, our decisions are often based on small randomized trials, highly specialized single-center studies, and above all, follow-ups that are too short to answer the questions that patients actually ask:

  • What happens to the pain at 5–10 years old?

  • What are the determinants of a recurrence, a reintervention, or a favorable fertility trajectory?

  • And what is the comparative, long-term impact of the different medical and surgical strategies?


This is precisely the ambition of the IFEMENDO cohort (NCT07243587) , structured on the No Endo platform : to transform daily clinical activity into standardized longitudinal data, usable scientifically.

This initiative is part of the continuation of the CIRENDO cohort (North-West Inter-Regional Cohort of patients operated on for endometriosis, NCT02294825) , coordinated by Professor Horace Roman since 2009 at the University Hospital of Rouen, which has enabled the publication of numerous clinical studies involving more than 3,500 patients.

What it is, in concrete terms

  • Observational, prospective, single-center, non-interventional study (it does not modify the care strategy, does not add specific examinations, and is part of the usual follow-up).

  • Inclusion of adult women with confirmed pelvic endometriosis (imaging and/or histology).

  • Collection according to the principle of non-opposition , with the possibility of withdrawal at any time.


How is the monitoring organized?

The core of the system is structured and repeatable monitoring:

  • At inclusion: medical history, symptoms, fertility, quality of life.

  • In the case of surgery: a section is completed by the surgeon (locations, procedures, complications).

  • Follow-up: questionnaires at 1, 3, 5, 7 and 10 years, on the same areas (symptoms, QoL, fertility, re-interventions).

The form can be completed online on NO ENDO or on paper (with transcription by clinical research associates), which facilitates broad inclusion and limits loss to follow-up.


Regulatory aspects

The IFEMENDO cohort has received approval from the Research Ethics Committee in Obstetrics and Gynecology ( CEROG 2020-GYN-2611 ) and complies with current regulations regarding the protection of personal data ( GDPR, reference methodology MR-004 ).


Current results

Since its launch in 2021, more than 10,500 patients have been included in the IFEMENDO cohort, making it one of the largest prospective databases dedicated to endometriosis in Europe. This sample size allows for robust statistical analyses.

The cohort has already enabled the publication of several scientific studies $^{1-8}$.

Conclusion


With more than 10,500 inclusions and a planned follow-up of 10 years, the IFEMENDO cohort represents a major scientific resource for understanding endometriosis and optimizing its management.


This observational research approach fits perfectly into the mission of IFEMendo, certified Center of Excellence in Multidisciplinary Endometriosis Care by the Surgical Review Corporation, to advance scientific knowledge for the benefit of all women with endometriosis.


Kristina Ananian - Clinical Research Technician

References:


  1. Crestani A, Merlot B, Goualard PH, Nyangoh Timoh K, Roman H. Laparoscopic sclerotherapy for

    ovarian endometriomas during surgery for deep endometriosis: Outcomes of a 134-patient cohort.

    Int J Gynecol Obstet. 2025;171:431-437. doi:10.1002/ijgo.15924.

  2. Crestani A, Merlot B, Belingar F, Milles M, Dennis T, Chanavaz-Lacheray I, Roman H. Very long-

    term outcomes after surgery for colorectal endometriosis: a 15-year follow-up study. Fertil Sterile.

    2025 Nov 15;S0015-0282(25)02243-5. doi:10.1016/j.fertnstert.2025.11.011.

  3. Crestani A, Merlot B, Dennis T, Chanavaz-Lacheray I, Roman H. Impact of Laparoscopic

    Sclerotherapy for Ovarian Endometriomas on Ovarian Reserve. J Minimally Invasive Gynecol.

    2023;30(1):32-38. doi:10.1016/j.jmig.2022.10.001.

  4. Aupetit A, Grigioni S, Roman H, Coëffier M, Bréant A, Hennetier C, Achamrah N. Association

    between Endometriosis, Irritable Bowel Syndrome and Eating Disorders: ENDONUT Pilot Study. J

    Clin Med. 2022;11(19):5773. doi:10.3390/jcm11195773.

  5. Namazov A, Kathurusinghe S, Mehdi E, Merlot B, Prosszer M, Tuech JJ, Marpeau L, Roman H.

    Evolution of Bowel Complaints after Laparoscopic Endometriosis Surgery: A 1497 Women

    Comparative Study. J Minimally Invasive Gynecol. 2022;29(4):499-506.

    doi:10.1016/j.jmig.2021.11.018.

  6. Mehedintu C, Frincu F, Brinduse LA, Carp-Veliscu A, Bratila E, Hennetier C, Roman H.

    Postoperative Assessment of the Quality of Life in Patients with Colorectal Endometriosis. J Clin

    Med. 2021;10(21):5211. doi:10.3390/jcm10215211.

  7. Roman H, Merlot B, Forestier D, Noailles M, Magne E, Carteret T, Tuech JT, Martin DC.

    Nonvisualized palpable bowel endometriotic satellites. Hum Reprod. 2021;36(3):656-665.

    doi:10.1093/humrep/deaa340.

  8. Roman H, Desnyder E, Pontré J, Hennetier C, Klapczynski C, Collard P, Cornu JN, Tuech JJ.

    Combined vaginal-laparoscopic approach vs. laparoscopy alone for prevention of bladder voiding

    dysfunction after removal of large rectovaginal endometriosis. J Visc Surg. 2021;158(2):118-124.

    doi:10.1016/j.jviscsurg.2020.07.004.


 
 
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