To ensure that the experiences and expectations of people affected by endometriosis and infertility are incorporated into research projects, the “Women’s and Couples’ Health” France 2030 research program has set up a patients participative committee.
The main tasks of this committee are to:
- Engage with researchers to provide a patient perspective
- Review and co-develop research protocols
- Share experiences to enrich studies
- Contribute to awareness-raising and information initiatives, particularly at scientific and public events
In addition, the committee is associated with the INSPIRE ComPaRe platform, which allows patients to propose and prioritize research ideas.
To guarantee the long-term viability of the participative patient committee, it was established in collaboration with associations from the field: ENDOmind, EndoFrance, EndoAction, Collectif BAMP (Metropolitan France, French Guiana, Martinique), SOPK Europe, Fibrome Info France, Mon Endométriose Ma Souffrance, Fondation pour la recherche sur l’endométriose.