Pulmonary Hypertension Knowledge Sharing Platform

Just out on the European Respiratory Journal, "A Long-Term Follow-Up Study of Sotatercept for Treatment of Pulmonary Arterial Hypertension: Interim Results of SOTERIA", an ongoing open-label study evaluating long-term safety, tolerability, and efficacy of #sotatercept in participants with #pulmonaryarterialhypertension #PAH. Authors Ioana Preston, David Badesch, Ardeschir Ghofrani, Simon Gibbs, Mardi Gomberg-Maitland, Marius Hoeper, Marc Humbert, Vallerie McLaughlin, Aaron Waxman, Solaiappan(Mani) Manimaran, PhD, MBA Manimaran, Elina Mikhailova, Madhavi Reddy, @Anna Lau, Janethe Deolina Oliveira Pena de Oliveira Pena, Rogerio Souza #pulmonaryhypertension #pulmonaryarterialhypertension #PAH #chronicthromboembolicpulmonaryhypertension #CTEPH #knowledgesharing #knowledgeexchange #patientempowerment #patienteducation #allianceforph #organtransplant #organdonation #transplant #lungtransplant HTaPFrance Stichting Pulmonale Hypertensie / PH Association the Netherlands PH Belgium - Pulmonale Hypertensie vzw AIPI Italian Pulmonary Hypertension Association Pulmoner Hipertansiyon ve Skleroderma Hasta Dernegi Hellenic Community for Pulmonary Hypertension Pulmonale Hypertonie E.V. Ieva Plume PHA Polska PHA Japan Alliance for Pulmonary Hypertension Pulmonary Hypertension Knowledge Sharing Platform Knowledge Sharing Platform https://lnkd.in/dcrNiQFz

When I started writing, I thought that I would never have enough information to share. If I can be that voice to make sure that others in the community are heard, that's all I'm going to do. PH Patient, Jen Cueva @phaware podcast ep 509 @PulmonaryNews https://lnkd.in/dfF3rcgD

A recent article in The Lancet reports on discussions held between a group of international experts at the 20th Global CVCT - Cardiovascular Clinical Trialists Forum, patients' representatives (Gergely Meszaros JD, MSc), and members of global regulatory agencies to discuss future treatment objectives and trial designs in pulmonary arterial hypertension. Important questions were raised around the challenges in recognising a treatment as "disease modifying", as this implies showing a persisting treatment effect after drug withdrawal, which has not yet been studied in pulmonary arterial hypertension, and which poses ethical concerns. What is more important to patients anyway? The designation of a drug as a disease modifying agent? Or outcomes that are directly relevant to them such as how they feel, function, and survive? The concept of partial and complete remission might better suit the needs of this particular disease area. The authors of the Lancet article address these issues and discuss possible definitions of what might constitute a partial or full remission in pulmonary arterial hypertension. Read more at this link on the Pulmonary Hypertension Knowledge Sharing Platform https://lnkd.in/dUawUVY4 Authors Franck Rahaghi, Marc Humbert, Marius Hoeper, James White, Robert Frantz, Paul Hassoun, anna hemnes, Steven Kawut, Vallerie McLaughlin, Gergely Meszaros, Peter Mol, @Steven Nathan, Mitchel Psotka, Farbod Rahaghi, Olivier SITBON, Norman Stockbridge, Jason Weatherald, Faiez Zannad, Sandeep Sahay, MD, MSc

Thanks Gergely Meszaros JD, MSc for sharing this important work in which you were involved in. The article raises some very important questions around the challenges in recognising a treatment as "disease modifying" as this implies showing a persisting treatment effect after drug withdrawal, which has not yet been studied in PAH.

The authors of a study published in "Patient Education and Counseling" on February 19, 2025 offer a framework for actively involving people living with rare and complex conditions throughout the clinical practice guidelines development process, aiming to produce more inclusive and practical recommendations that better reflect real-world patient needs. Key points of proposal include the need to include diverse patient profiles (patients, expert patients and patient advocates), and need to adapt participation process to their preferences (schedule, locations, transportation or virtual platforms). In the field of pulmonary hypertension great progress has been made with respect to involvement of patients in clinical guidelines development: two patient advocates, Gergely Meszaros JD, MSc and Pisana Ferrari, who is also a patient, were included as co-authors of the joint European Society of Cardiology and European Respiratory Society 2002 guidelines (the most recent to date), setting an important precedent for the future. The work on the guidelines took place between 2020-2022 during the COVID pandemic, so all the work was conducted virtually. Read more at this link on the Pulmonary Hypertension Knowledge Sharing Platform Authors Anabel Granja Domínguez  Carmen Martín Gómez  Juan Darío Ortigoza-Escobar  Rocío Rodriguez-Lopez  Lourdes Gonzalez-Bermudez  Stefania Dantone  Stefano Pavanello Pavanello  Juan Antonio Blasco-Amaro https://lnkd.in/g97PWXsf

Well done Stefano Pavanello and happy birthday!

Proud to share our recent study from the RACE trial: "Effect of Balloon Pulmonary Angioplasty and Riociguat on Right Ventricular Afterload and Function in CTEPH" published in Circ Cardiovasc Int La SPLF HTaPFrance https://lnkd.in/ePUehmRp

Medication non-adherence in pulmonary arterial hypertension (PAH) can significantly impact patient outcomes, yet its prevalence and consequences remain understudied. A multi-center registry analysis, published in the Annals of the American Thoracic Society, examined self-reported non-adherence rates among pulmonary arterial hypertension and chronic thromboembolic pulmonary hypertension (CTEPH) patients, identifying key socioeconomic predictors and associated healthcare outcomes. Using data from the Pulmonary Hypertension Association Registry (PHAR), researchers analyzed patterns of non-adherence and their relationship with hospitalization rates, emergency department visits, and quality of life measures. Read more on the Pulmonary Hypertension Knowledge Sharing Platform at this link https://lnkd.in/eQ3ntHeA #pulmonaryhypertension #pulmonaryarterialhypertension #PAH #chronicthromboembolicpulmonaryhypertension #CTEPH #knowledgesharing #knowledgeexchange #patientempowerment #patienteducation #allianceforph #organtransplant #organdonation #transplant #lungtransplant HTaPFrance Stichting Pulmonale Hypertensie / PH Association the Netherlands PH Belgium - Pulmonale Hypertensie vzw AIPI Italian Pulmonary Hypertension Association Pulmoner Hipertansiyon ve Skleroderma Hasta Dernegi Hellenic Community for Pulmonary Hypertension Pulmonale Hypertonie E.V. Ieva Plume PHA Polska PHA Japan Alliance for Pulmonary Hypertension

"Sharing my story in a professional journal was both challenging and an honour." We spoke with Natalia Maeva about sharing her story in the European Respiratory Society journal Breathe, and the impact of including patient voices in medical publications. Read our interview with Natalia: https://lnkd.in/gUmBcgdD

Following the official launch of its pulmonary arterial hypertension policy toolkit in Barcelona last November at PHAEUROPE's Annual Conference, The Health Policy Partnership has been working on dissemination opportunities of this important work, which was endorsed by the Alliance for Pulmonary Hypertension along with several of the major patient associations active in the PH field. On 29 January 2025, the HPP team presented a concise version of the toolkit translated in Polish at the Healthcare Priorities Conference in Warsaw. During the conference, they were able to engage multiple stakeholders, from clinicians and ministers to patient advocates. HPP Managing Director Ed Harding presented the findings and insights during a panel discussion that included the President of Poland's Pulmonary Hypertension association - Polskie Stowarzyszenie Osób z Nadciśnieniem Płucnym i Ich Przyjaciół - Małgorzata Piekarska), a PAH clinical leader and national policymakers, including the Deputy Minister of Health for Rare Diseases and the Chair of the Parliamentary Team for Rare Diseases. While in Poland, the HPP team also had the opportunity to join interviews with local media outlets, including WPROST and Termedia. Ed Harding discussed the value of the toolkit work and how it can support patient advocates in discussions with policymakers. The expert steering committee of the HPP policy toolkit includes Dr Pilar Escribano Prof. Marc Humbert, Prof Nicholas Kolaitis, Prof. Suntharalingam and patient association representatives Eva Otter Melanie Gallant-Dewavrin Natalia Maeva Pisana Ferrari Elizabeth Joseloff and Jamie Myrah Read more about the policy toolkit project at this link on the Pulmonary Hypertension Knowledge Sharing Platform : https://lnkd.in/de5j2kBR #pulmonaryhypertension #pulmonaryarterialhypertension #PAH #chronicthromboembolicpulmonaryhypertension #CTEPH #knowledgesharing #knowledgeexchange #patientempowerment #patienteducation #allianceforph #organtransplant #organdonation #transplant #lungtransplant