“Patient partnership in cardiovascular clinical trials”, European Heart Journal

This paper, titled “”Patient partnership in cardiovascular clinical trials”, published in the European Heart Journal, assesses current initiatives and identifies opportunities for furthering meaningful patient involvement in cardiovascular clinical research. According to the authors, patients are fundamentally the ultimate beneficiaries of medical treatments, and their active engagement as contributors and decision-makers in the product development […]

“Patient partnership in cardiovascular clinical trials”, European Heart Journal Read Post »

Patient Perspectives in the French RHU DESTINATION 2024 project on Chronic Thromboembolic Pulmonary Hypertension (CTEPH) Management

RHU DESTINATION 2024 is a hospital and university research funded by the French government. It is led by Prof. Marc Humbert, Director of the French National Pulmonary Hypertension Reference Centre, and coordinated by the Assistance Publique-Hôpitaux de Paris (Bicêtre Hospital). Partners include the University of Paris-Saclay, Inserm, Marie Lannelongue Hospital, as well as three private

Patient Perspectives in the French RHU DESTINATION 2024 project on Chronic Thromboembolic Pulmonary Hypertension (CTEPH) Management Read Post »

Highlights from the European Respiratory Society (ERS) 2023 Congress on the topic of pulmonary hypertension by Prof. Marc Humbert, Director of the French National Pulmonary Hypertension Centre

The European Respiratory Society (ERS) has issued an eight-episode series offering summaries of disease specific content from its annual congress which took place in Milan, Italy, September 20-23, 2023 In one of the episodes, European Respiratory Society (ERS) Past President Prof. Marc Humbert, Director of the French National Pulmonary Hypertension Centre, selects his highlights from

Highlights from the European Respiratory Society (ERS) 2023 Congress on the topic of pulmonary hypertension by Prof. Marc Humbert, Director of the French National Pulmonary Hypertension Centre Read Post »

The lay summary of the European Society of Cardiology and European Respiratory Society clinical guidelines on pulmonary hypertension is now available in 11 languages

Did you know that the lay summary of the European Society of Cardiology and European Respiratory Society clinical guidelines on pulmonary hypertension is now available in 11 languages: English, French, German, Greek, Italian, Polish, Portuguese (Portugal), Russian, Spanish, Romanian, Ukrainian. The English version of the lay summary was developed with the active collaboration of the two

The lay summary of the European Society of Cardiology and European Respiratory Society clinical guidelines on pulmonary hypertension is now available in 11 languages Read Post »

Patients take centre stage at the Annual Congress of the European Society for Organ Transplant in Athens, September 17-20, 2023

The annual congress of the ESOT – European Society for Organ Transplantation is the largest and most influential scientific event in the field of transplantation science in the world. This year, patients and their well-being took center stage, with many sessions dedicated to shared decision making, shared care, and patient-related issues. The congress was attended

Patients take centre stage at the Annual Congress of the European Society for Organ Transplant in Athens, September 17-20, 2023 Read Post »

New European Lung Foundation (ELF) “Pulmonary Hypertension Patient Advisory Group”, PAG, set up!

The Alliance for Pulmonary Hypertension has been a proud member of the European Lung Foundation (ELF) Patient Organisation Network since May 2023 (see our article at this link). More recently, the European Lung Foundation has set up a new Patient Advisory Group dedicated specifically to pulmonary hypertension. The ELF’s Patient Advisory Groups, also known as

New European Lung Foundation (ELF) “Pulmonary Hypertension Patient Advisory Group”, PAG, set up! Read Post »

Want to find out more about Medicines R & D and Patient Engagement? Check out the EUPATI Toolbox, now available in 14 languages!

“EUPATI” stands for European Patient Academy on Therapeutic Innovation. Its mission is to provide accessible, innovative and inclusive education that empowers patients and patient representatives with the right knowledge, skills and competencies to effectively engage and partner with all other stakeholders in medicines R&D. The EUPATI Toolbox is organised in two main areas: Medicines R&D

Want to find out more about Medicines R & D and Patient Engagement? Check out the EUPATI Toolbox, now available in 14 languages! Read Post »

The 2023 PHA Canada Research scholarship application process opens September 1, 2023!

PHA Canada’s scholarship program awards up to $10,000 to outstanding trainees in support of their research into the field of pulmonary hypertension. This research program allows emerging pulmonary hypertension researchers—whose projects will contribute to the better understanding or treatment of pulmonary hypertension—to fully delve into their scientific studies, in collaboration with specialized pulmonary hypertension clinics

The 2023 PHA Canada Research scholarship application process opens September 1, 2023! Read Post »

The fascinating story about how the first ever right heart catheterisation was performed by a German physician, Dr. Werner Forssman, on himself!

Right Heart Catheterization (RHC) is the gold standard for diagnosing and classifying pulmonary hypertension. The story behind its invention is captivating, highlighting the remarkable strides that individuals driven by a passion for science and innovation can take, often braving risks to their own well-being and even lives! Werner Forssmann was born in Berlin in 1904,

The fascinating story about how the first ever right heart catheterisation was performed by a German physician, Dr. Werner Forssman, on himself! Read Post »

Lancet publishes ground-breaking three-paper series on pulmonary hypertension, the first of which is co-authored by a patient and patient advocate!

📣 Yesterday, August 14 2023, the The Lancet published a ground-breaking three-paper series on pulmonary hypertension. 1️⃣ In the first paper, Prof. Marc Humbert and colleagues provide an overview of the pathophysiology of pulmonary arterial hypertension, current therapeutic approaches, and emerging treatment options, with a forward-looking discussion of innovative solutions for future clinical trials. We

Lancet publishes ground-breaking three-paper series on pulmonary hypertension, the first of which is co-authored by a patient and patient advocate! Read Post »

Pulmonary hypertension advocate Gergely Meszaros speaks at the Association of Cardiovascular Nursing & Allied Professions (ACNAP)’s annual conference in Edinburgh

Gergely Meszaros, a pulmonary hypertension advocate and Project Manager at the European Reference Network for Rare Lung Diseases, ERN-LUNG, was invited to speak at the Association of Cardiovascular Nursing & Allied Professions (ACNAP) of the European Society of Cardiology Annual Congress in Edinburgh, UK, on June 23-24, 2023. Gergely’s talk was about the 2022 joint European Society

Pulmonary hypertension advocate Gergely Meszaros speaks at the Association of Cardiovascular Nursing & Allied Professions (ACNAP)’s annual conference in Edinburgh Read Post »

Lay summary of the 2022 ESC/ERS clinical guidelines on the diagnosis and treatment of pulmonary hypertension now available in 11 languages!

“Diagnosing and treating pulmonary hypertension – understanding the professional guidelines” is an easy to understand summary of the joint European Society of Cardiology (ESC) and European Respiratory Society (ERS) clinical guidelines for pulmonary hypertension (PH). It was published on the European Lung Foundation (ELF) website on 02/11/2022. It is for people with pulmonary hypertension, or

Lay summary of the 2022 ESC/ERS clinical guidelines on the diagnosis and treatment of pulmonary hypertension now available in 11 languages! Read Post »

The International Respiratory Coalition (IRC) launches it official Manifesto for Better Respiratory Health at its Summit on 26-27 June 2023

The International Respiratory Coalition (IRC) is a coalition of respiratory clinicians and professional societies, including the European Respiratory Society (ERS) and European Lung Foundation (ELF), patients and industry partners was launched in September 2021. The second IRC Summit took place in Lisbon, Portugal on 26–27 June 2023. The event was an important opportunity for representatives

The International Respiratory Coalition (IRC) launches it official Manifesto for Better Respiratory Health at its Summit on 26-27 June 2023 Read Post »

Center-based Care for Pulmonary Hypertension: A European Perspective, Advances in Pulmonary Hypertension, J. Simon R. Gibbs, MD, FRCP, Olivier Sitbon, MD, PhD

While this article may not be the most recent, it continues to hold value as a point of reference for those seeking insights into the organization of pulmonary hypertension care in France and UK. Although some information might require updating, its core principles remain relevant. Both France and the UK have aimed to concentrate pulmonary

Center-based Care for Pulmonary Hypertension: A European Perspective, Advances in Pulmonary Hypertension, J. Simon R. Gibbs, MD, FRCP, Olivier Sitbon, MD, PhD Read Post »

“Artificial intelligence in healthcare and education”, BDJ, May 26, 2023

“AI has the potential to bring about positive changes in healthcare and to empower patients by providing them with more control over their health”, reads an article in the BDJ published on May 26, 2023, which, interestingly, was entirely written by Chat GPT, an AI conversation tool developed by Open AI! Manas Dave and Neil Patel,

“Artificial intelligence in healthcare and education”, BDJ, May 26, 2023 Read Post »

Study on Patient-Reported Outcome Measures for Assessment of Health-Related Quality of Life in Patients With Pulmonary Hypertension, CHEST, November 2022

Pulmonary hypertension significantly affects patients’ quality of life. A review of published literature and clinical trials in pulmonary hypertension was conducted by the authors of this study to identify and evaluate patient-reported outcome measures (PROMs) that assess pulmonary hypertension-specific HRQoL for use in clinical studies. To assess treatment benefits and patient experiences, various PROMs were

Study on Patient-Reported Outcome Measures for Assessment of Health-Related Quality of Life in Patients With Pulmonary Hypertension, CHEST, November 2022 Read Post »

Exploring Geographic Barriers to Care Access for Patients With Pulmonary Arterial Hypertension in the US, a study presented at the American Thoracic Society (ATS) Annual Congress, May 19-24, 2023

A recent article in Drug Topics, reports on the findings of a study presented at the 2023 American Thoracic Society International Conference, held from May 19 to 24 in Washington, DC, which reveals that the majority of patients with pulmonary arterial hypertension (PAH) live in an area that has a shortage of health care professionals,

Exploring Geographic Barriers to Care Access for Patients With Pulmonary Arterial Hypertension in the US, a study presented at the American Thoracic Society (ATS) Annual Congress, May 19-24, 2023 Read Post »

Currently enrolling: HYPERION Phase 3 clinical trial to evaluate Sotatercept on top of background pulmonary arterial hypertension therapy in newly diagnosed intermediate-and high-risk patients

This is a phase 3, randomized, double-blind, placebo-controlled study to evaluate sotatercept when added to background pulmonary arterial hypertension therapy in newly diagnosed intermediate- or high risk pulmonary arterial hypertension participants. The estimated enrolment is participants is 662 and the estimated completion date is August 31, 2028. The sponsor is Acceleron Pharma, Inc., a wholly-owned

Currently enrolling: HYPERION Phase 3 clinical trial to evaluate Sotatercept on top of background pulmonary arterial hypertension therapy in newly diagnosed intermediate-and high-risk patients Read Post »

May 20 is “International Clinical Trials Day”, a day to raise awareness about clinical trials and their contribution to public health

The International Clinical Trials Day is organised yearly on May 20, since 2014, by the Association of Clinical Research Professionals (ACRP), as an opportunity for the clinical research community to to celebrate what has been accomplished in this field and recommit to push even further. Learn more about International Clinical Trials Day at this link

May 20 is “International Clinical Trials Day”, a day to raise awareness about clinical trials and their contribution to public health Read Post »

Pulmonary endarterectomy (PEA) Leads to Long-term QOL Improvement in People With CTEPH, study suggests, American Journal of Managed Care

Pulmonary endarterectomy (PEA) is the recommended first-line treatment for patients with chronic thromboembolic pulmonary hypertension (CTEPH), if they qualify for the procedure. Alternative therapies include balloon pulmonary angioplasty (BPA) or medical therapy. An article by Jared Kaltwasser for the American Journal of Managed Care, dated April 17, 2023, presents the results of a Swedish single

Pulmonary endarterectomy (PEA) Leads to Long-term QOL Improvement in People With CTEPH, study suggests, American Journal of Managed Care Read Post »

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