Prognostic relevance of exercise pulmonary hypertension: results of the multicentre PEX-NET Clinical Research Collaboration, European Respiratory Journal

The PEX-NET (Pulmonary Haemodynamics during Exercise Network) registry enrolled patients who underwent clinically indicated right heart catheterisations both at rest and ergometer exercise from 23 PH centres worldwide. The aim of the study was to explore the prognostic relevance of exercise haemodynamics and its added value to resting haemodynamics are missing. The study finds that […]

Prognostic relevance of exercise pulmonary hypertension: results of the multicentre PEX-NET Clinical Research Collaboration, European Respiratory Journal Read Post »

Update on the Pulmonary Vascular Research Institute (PVRI)’s Pulmonary Hypertension Global Survey (PH GPS)

Almost 4,000 patients and carers across 85 countries completed Phase 1 of the Pulmonary Hypertension Global Patient Survey (PH GPS). The survey was translated into 24 languages and launched in October 2023. The survey was written by a multidisciplinary panel of pulmonary hypertension specialists and patient group advocates from the pulmonary hypertension associations of Europe,

Update on the Pulmonary Vascular Research Institute (PVRI)’s Pulmonary Hypertension Global Survey (PH GPS) Read Post »

Special issue of “Transplant International” addresses race, gender, socioeconomic and geographic disparities in transplantation

Transplant International has published a special issue of its journal on “Diversity, Equity, and Inclusion in Transplantation”. This issue presents a collection of studies that examine inequities in transplantation related to race, gender, socioeconomics, and geography, providing evidence and insights into these persistent disparities. Download the pdf of the special issue of Transplant International at

Special issue of “Transplant International” addresses race, gender, socioeconomic and geographic disparities in transplantation Read Post »

Effective Communication Key to Improving Medication Adherence in Pulmonary Arterial Hypertension, findings of the PERSIST Study, Pulmonary Circulation

A recent study published in Pulmonary Circulation highlights the vital role of proactive communication in improving medication persistence among individuals with pulmonary arterial hypertension. The study, titled PERSIST (Practices affEcting macitentan and selexipag patient persistence Rates utilizing pulmonary arterial hypertension clinical Site and patIent perSpecTives), surveyed 134 patients and 23 healthcare professionals across the United

Effective Communication Key to Improving Medication Adherence in Pulmonary Arterial Hypertension, findings of the PERSIST Study, Pulmonary Circulation Read Post »

Appraisal and evaluation of quality of life in pulmonary arterial hypertension instruments: A systematic review, Respiratory Medicine, November/December 2024

This systematic review, published on the Respiratory Medicine November-December 2024 issue, focuses on identifying and evaluating quality of life (QoL) measurement instruments specifically designed for patients with pulmonary arterial hypertension (PAH): EmPHasis-10, CAMPHOR, PAH SYMPACT, and LPHQ. Using the 2018 COSMIN guidelines, the researchers searched multiple medical databases to assess these instruments’ psychometric properties. While

Appraisal and evaluation of quality of life in pulmonary arterial hypertension instruments: A systematic review, Respiratory Medicine, November/December 2024 Read Post »

Efficacy and Safety of Sotatercept Across Ranges of Cardiac Index in Patients with Pulmonary Arterial Hypertension, Journal of Heart and Lung Transplantation, December 5, 2024

Pooled data from the PULSAR and STELLAR trials were used for this study, published on December 5, 2024 on the The Journal of Heart and Lung Transplantation, which compared effects of the activin signaling inhibitor sotatercept (Winrevair) across pulmonary arterial hypertension (PAH) subgroups stratified by baseline cardiac index (CI). The analysis evaluated 429 participants divided

Efficacy and Safety of Sotatercept Across Ranges of Cardiac Index in Patients with Pulmonary Arterial Hypertension, Journal of Heart and Lung Transplantation, December 5, 2024 Read Post »

Challenges associated with non-oral pulmonary arterial hypertension treatments, Aldo Aguirre-Camacho, Therapeutic Advances in Respiratory Disease

A study titled “Patients’ perspectives on the challenges associated with receiving non-oral pulmonary arterial hypertension treatment: a mixed methods study”, by Aldo Aguirre-Camacho, was published on “Therapeutic Advances in Respiratory Disease” on November 21, 2024. The study investigates how non-oral treatments for pulmonary arterial hypertension impact patients’ quality of life beyond the challenges posed by

Challenges associated with non-oral pulmonary arterial hypertension treatments, Aldo Aguirre-Camacho, Therapeutic Advances in Respiratory Disease Read Post »

Findings of European Patient Forum (EPF) survey on the implementation of EU legislation on medical devices now published

The EU Medical Device Regulation (MDR) and In Vitro Diagnostic Regulation (IVDR), introduced in 2017, aims to enhance patient safety, transparency, and information through stricter quality standards, performance evaluations, and oversight across the device lifecycle. But not all changes have been fully put into action, and many patients are still waiting to see benefits. To

Findings of European Patient Forum (EPF) survey on the implementation of EU legislation on medical devices now published Read Post »

The first evaluation report of the European Reference Networks since their launch in 2017 has now been published by the EU Commission

European Reference Networks (ERNs) represent an innovative approach to addressing rare and complex diseases across Europe. These virtual networks connect specialized healthcare providers, creating a collaborative platform that transcends national boundaries to improve patient diagnosis, treatment, and care. Comprising 24 distinct networks, the European Reference Network is a complex ecosystem involving approximately 1,.600 healthcare professional

The first evaluation report of the European Reference Networks since their launch in 2017 has now been published by the EU Commission Read Post »

Overcoming Depression & Low Mood: A self-help programme for people with pulmonary hypertension by the Pulmonary Hypertension Association UK, PHA UK.

Developed by psychologists, and supported by the Pulmonary Hypertension Association UK, this four-week programme consists of a series of workbooks based on Cognitive Behavioural Therapy (CBT) to help you change your thinking habits and behaviours. You can work through them in your own time and in your own home. The programme has been tested with

Overcoming Depression & Low Mood: A self-help programme for people with pulmonary hypertension by the Pulmonary Hypertension Association UK, PHA UK. Read Post »

“There are so many things to be thankful for, even with pulmonary hypertension”, Jen Cueva, Pulmonary Hypertension News, November 20, 2024

A very touching and inspiring article by Jen Cueva was published in a recent edition of Pulmonary Hypertension News. This piece beautifully emphasizes gratitude as a transformative practice, even amid adversity. Jen effectively balances acknowledgment of the hardships of living with PH with a constructive approach to fostering positivity. The actionable advice—such as empathetic listening,

“There are so many things to be thankful for, even with pulmonary hypertension”, Jen Cueva, Pulmonary Hypertension News, November 20, 2024 Read Post »

Pulmonary Hypertension: From Therapeutic Nihilism to Multiple Therapeutic Interventions, Vallerie V. McLaughlin, Marc Humbert, “Circulation”, November 18, 2024

This article, titled “Pulmonary Hypertension: From Therapeutic Nihilism to Multiple Therapeutic Interventions”, published on November 18, 2024 on Circulation, is undoubtedly encouraging and hopeful, showcasing the tremendous progress made in the field of pulmonary hypertension. It highlights how far we’ve come, from no treatments to over a dozen targeted therapies addressing multiple pathways, improving the

Pulmonary Hypertension: From Therapeutic Nihilism to Multiple Therapeutic Interventions, Vallerie V. McLaughlin, Marc Humbert, “Circulation”, November 18, 2024 Read Post »

SGLT2 Inhibitors (originally designed for treating diabetes-2) show potential to boost survival in pulmonary arterial hypertension patients, Isabella Hornick, “Healio”, October 2024

An article by medical journalist Isabella Hornick recently published on “Healio” reports on a retrospective study which suggests that sodium-glucose cotransporter-2 (SGLT2) inhibitors may significantly reduce all-cause mortality in patients with pulmonary arterial hypertension (PAH). While these findings are promising, further prospective clinical trials are needed to confirm the results and address potential biases, according

SGLT2 Inhibitors (originally designed for treating diabetes-2) show potential to boost survival in pulmonary arterial hypertension patients, Isabella Hornick, “Healio”, October 2024 Read Post »

The Health Policy Partnership teams up with a multidisciplinary group of international experts to develop a policy toolkit for pulmonary arterial hypertension

The The Health Policy Partnership, a UK-based specialist health policy consultancy. convened a multidisciplinary group of international experts – consisting of pulmonary arterial hypertension patient advocates, cardiologists and pulmonologists – to support the development of a range of advocacy resources. The expert steering committee includes Dr Pilar Escribano Prof. Marc Humbert, Prof Nicholas Kolaitis, Prof

The Health Policy Partnership teams up with a multidisciplinary group of international experts to develop a policy toolkit for pulmonary arterial hypertension Read Post »

Deep learning model outperforms echocardiography in identifying pulmonary hypertension, CHEST, October 24, 2024

A new multimodal fusion model (MMF-PH) has outperformed transthoracic echocardiography (TTE) in accurately diagnosing pulmonary hypertension (PH) and identifying its subtypes, as presented at the CHEST Annual Meeting in Boston from 6-9 October. By integrating data from demographics, chest X-rays, electrocardiogram, and transthoracic echocardiography, this model reduces the need for invasive right heart catheterization. In

Deep learning model outperforms echocardiography in identifying pulmonary hypertension, CHEST, October 24, 2024 Read Post »

The Rise of the “Expert” Patient: Opportunities and Challenges in Democratizing Drug Development

For many years, drug development has lagged behind healthcare in engaging patients. Recently, however, the field has shifted toward more active patient involvement, recognizing the value of patient insights both for democratizing drug creation and enhancing innovation. A recent article published in “Science is Culture” analyzes the potential and challenges of involving patients in drug

The Rise of the “Expert” Patient: Opportunities and Challenges in Democratizing Drug Development Read Post »

The Impact of Pulmonary Hypertension on Caregivers: A Systematic Review of Experiences and Unmet Needs, Pulmonary Circulation, April 2022

Pulmonary hypertension (PH) presents a complex and life-altering burden for patients and their caregivers. Although caregivers play a pivotal role in the quality of life and well-being of PH patients, little is known about the specific challenges and needs these caregivers face. This review, titled “Examining the impact of pulmonary hypertension on nonprofessional caregivers: A

The Impact of Pulmonary Hypertension on Caregivers: A Systematic Review of Experiences and Unmet Needs, Pulmonary Circulation, April 2022 Read Post »

Global, regional, and national burden of pulmonary arterial hypertension, 1990–2021: a systematic analysis for the Global Burden of Disease Study 2021, The Lancet Respiratory Medicine, October 18, 2024

In a large study published on the The Lancet Respiratory Medicine on October 18, 2024, epidemiological and vital registry data were analysed to estimate the non-fatal and fatal burden of pulmonary arterial hypertension, using standard GBD (Global Burden of Diseases) modelling approaches. 🔹 The aim of this investigation was to better characterise the worldwide epidemiology

Global, regional, and national burden of pulmonary arterial hypertension, 1990–2021: a systematic analysis for the Global Burden of Disease Study 2021, The Lancet Respiratory Medicine, October 18, 2024 Read Post »

The global burden of pulmonary arterial hypertension: profound but improving?, The Lancet Respiratory Medicine, October 18, 2024

An article titled “The global burden of pulmonary arterial hypertension: profound but improving?”, was published on October 18, 2024, on the The Lancet Respiratory Medicine. The authors are Joe Newman,Pulmonary Vascular Disease Unit, Royal Papworth Hospital, Cambridge, UK, Department of Medicine, University of Cambridge, Cambridge, UK and Joanna Pepke-Zaba, Pulmonary Vascular Disease Unit, Royal Papworth

The global burden of pulmonary arterial hypertension: profound but improving?, The Lancet Respiratory Medicine, October 18, 2024 Read Post »

From Dr. Google to Dr. ChatGPT: Evaluating the Credibility of ChatGPT for Pulmonary Arterial Hypertension Information

Patients worldwide are increasingly switching from Dr. Google to Dr. Chat GPT. A recent article titled “Trustworthiness, Value, Danger, and Readability of ChatGPT-Generated Responses to Health Questions Related to Pulmonary Arterial Hypertension”, published in the Cureus Journal of Medical Science on October 14, 2024, aimed to determine how well ChatGPT could accurately and consistently respond

From Dr. Google to Dr. ChatGPT: Evaluating the Credibility of ChatGPT for Pulmonary Arterial Hypertension Information Read Post »

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