The 6th “Journées du Réseau Français de l’Hypertension Pulmonaire” (JRF-HTP), held in October 2024, provided a review of the evolving landscape in pulmonary hypertension (PH). The meeting brought together clinicians and researchers to exchange on the most recent scientific, clinical, and organizational advances in pulmonary hypertension. We are proud that a patient advocate was included as co-author, well done Mélanie Gallant Dewavrin!
These are the topics discussed, as summarised in an article for Respiratory Medicine and Research, published in November 2025.
- Patient perspectives
- Pathobiology and mechanisms of PH
- Genetic and genomic in pulmonary arterial hypertension (PAH)
- Right ventricular (RV) dysfunction in PAH
- Definition and classification of PAH
- New technologies to improve early diagnosis and refine treatment response
- Risk stratification and treatment goals
- PAH treatment algorithm
- Management of PH in special conditions
- Clinical trial design and endpoints in PAH
- Pulmonary hypertension associated with left heart disease
- Pulmonary hypertension associated with chronic lung disease
- Unresolved questions in chronic thromboembolic pulmonary hypertension
- Paediatric pulmonary hypertension
- Conclusion
This is a summary of the first section on Patient Perspectives, you can read the full article at this link on Respiratory Medicine and Research.
Summary of section on Patient Perspectives
The 6th and 7th World Symposia on Pulmonary Hypertension formally recognized the critical importance of patient voices in pulmonary hypertension care and research. This led to the inclusion of two patient advocates in the development of the 2022 ESC/ERS Guidelines, which were simultaneously published with patient-friendly lay summaries in 12 languages.
Key Recommendations: pulmonary hypertension centres should systematically inform patients about patient associations and collaborate with them on initiatives focused on health literacy, digital skills, healthy lifestyles, mental health support, and self-management capabilities.
Patient Association Requirements: The 7th WSPH established minimum criteria for effective patient organization collaboration: legal registration, patient/caregiver focus, not-for-profit status, transparent operation, scientific committee establishment, and pulmonary hypertension awareness prioritization.
Major Achievements: Patient associations have made substantial progress globally and in France through World PH Day (May 5), Pulmonary HypertensionAwareness Month (November), CTEPH Awareness Day (November 8), advocacy campaigns, scientific publication co-authorship, conference participation, media engagement, and manifesto publication advocating for improved diagnosis and treatment.
Patient-Reported Outcome Measures (PROMs): The EMPHASIS-10 score has been integrated into the French pulmonary hypertension national registry and serves as a quality indicator in the UK. While Patient-Reported Outcome Measures provide validated patient-centered assessments of symptoms and quality of life, evidence for their incremental prognostic value beyond standard clinical markers remains limited and requires further research, particularly as clinical trial endpoints.
Patient Advocacy Priorities: Patient advocates called for inclusion as research partners, stronger collaboration with stakeholders, pharmaceutical legislation advocacy, healthcare inequality reduction, improved care access, heightened public and professional awareness, and better psychological support for pulmonary hypertension patients.
Citation
Athénaïs Boucly, Antoine Beauvais, Thomas Lacoste-Palasset, Mitja Jevnikar, Marianne Riou, Sabina Solinas, Fabrice Antigny, Fabrice Bauer, Laurent Bertoletti, Damien Bonnet, Ari Chaouat, Vincent Cottin, Michele D’Alto, Marion Delcroix, Mélanie Gallant Dewavrin, Christophe Guignabert, Sébastien Hascoet, David G Kiely, Xavier Jaïs, Etienne-Marie Jutant, Nicolas Lamblin, Olaf Mercier, Pamela Moceri, Elise Noel-Savina, François Picard, Richard Trembath, Cécile Tromeur, Jean Luc Vachiery, Laurent Savale, Marc Humbert, Olivier Sitbon, David Montani, Evolving paradigms in pulmonary hypertension: Highlights of the 6th French Pulmonary Hypertension Network Meeting, Respiratory Medicine and Research, Volume 88,
2025, 101215, ISSN 2590-0412, https://doi.org/10.1016/j.resmer.2025.101215.
(https://www.sciencedirect.com/science/article/pii/S2590041225000625)
