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 »

Poor sleep quality should not be overlooked in pulmonary arterial hypertension patient as it represents an additional disease burden, Acta Cardiologica

“Poor sleep quality is an overlooked symptom in patients with pulmonary arterial hypertension (PAH), however it may significantly contribute to disease burden”, claim the authors of a study titled “Sleep Quality and Its Predictors among Dyspnea, Fatigue and Exercise Capacity in Pulmonary Arterial Hypertension”, published in Acta Cardiologica. Karen Jacobson-Sive has summarised the key takeaways

Poor sleep quality should not be overlooked in pulmonary arterial hypertension patient as it represents an additional disease burden, Acta Cardiologica 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 »

National Dutch Pulmonary Hypertension Information Day: A Blend of Education, Connection, and Hope

On Saturday, November 23, 2024, the Dutch National Pulmonary Hypertension Information Day brought together patients, caregivers, and medical professionals for an inspiring and informative symposium. This annual event, designed specifically for pulmonary hypertension patients and their loved ones, offered a full day of learning, connection, and support. The event was expertly chaired by Dr. Sanne

National Dutch Pulmonary Hypertension Information Day: A Blend of Education, Connection, and Hope Read Post »

Starting today, December 6, 2024, the International Symposium on Pulmonary Hypertension and 9th Meeting of the Latin American Leaders, Miraflores, Peru

The Sociedad Latina de Hipertensión Pulmonar SLHP, the Colegio Médico del Perú Región Lima and the pulmonary hypertension patient association “Llapan Kallpa”, are inviting to the ,The International Symposium on Pulmonary Hypertension and the 9th meeting of Latin American leaders being held on 6-7 December, with the participation of esteemed professionals including Dr. Pilar Escribano,

Starting today, December 6, 2024, the International Symposium on Pulmonary Hypertension and 9th Meeting of the Latin American Leaders, Miraflores, Peru 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 »

Prostacyclins Show New Hope for Inoperable CTEPH Patients: Meta-analysis Insights, Marisa Wexler, Pulmonary Hypertension News, November 6, 2024

A recent article on Pulmonary Hypertension News reports on the findings of a meta-analysis which suggest that prostacyclin pathway-targeting therapies hold promise for treating chronic thromboembolic pulmonary hypertension (CTEPH), particularly patients who are ineligible for surgery or experience persistent/recurrent symptoms after surgical intervention. However, the authors emphasize the need for larger-scale studies to confirm the

Prostacyclins Show New Hope for Inoperable CTEPH Patients: Meta-analysis Insights, Marisa Wexler, Pulmonary Hypertension News, November 6, 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 »

Video-recordings of all the presentations from the PHA Europe Annual PH Conference, which took place on November 6-10, 2024, now available on the Bel Air Center platform

The videos of the presentations and recorded sessions from the PHA Europe Annual Pulmonary Hypertension European Conference (APHEC) 2024, held in Castelldefels, Barcelona, Spain, are now available on the Bel Air Center platform. 1. Prof. Ardeschir Ghofrani: Current and future pulmonary hypertension treatments 2. Prof. Polona Mlakar: Chronic thromboembolic pulmonary hypertension (CTEPH) 3. Prof. Mona

Video-recordings of all the presentations from the PHA Europe Annual PH Conference, which took place on November 6-10, 2024, now available on the Bel Air Center platform Read Post »

The American Lung Association and the US Pulmonary Hypertension Association (PHA) partner to develop a tool to help a primary care physicians to recognise pulmonary hypertension earlier

Early diagnosis can save lives. To improve care for those living with pulmonary hypertension, the US pulmonary hypertension association, the PHA, and the American Lung Association have developed a “Guidance to the Guidelines,” a tool to help health care providers recognize pulmonary hypertension symptoms sooner and refer patients to specialists. This resource aims to reduce

The American Lung Association and the US Pulmonary Hypertension Association (PHA) partner to develop a tool to help a primary care physicians to recognise pulmonary hypertension earlier Read Post »

AfPH Board Member Louise Bouman reporting from the Annual PH Conference (APHEC) organised by PHA Europe in Barcelona

Quote from Louise’s article for the Dutch PH Association From November 6 to 10, 2024, it was time to the Annual General Meeting and Conference of PHA Europe. More than 70 delegates from 42 national organizations representing 37 countries participated. The Netherlands was represented by Korrie de Koning and Louise Bouman, secretary and chair of

AfPH Board Member Louise Bouman reporting from the Annual PH Conference (APHEC) organised by PHA Europe in Barcelona 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 »

Bridging the Gender Gap: Addressing Women’s Underrepresentation in Cardiovascular Research, American Journal of Managed Care, October 15, 2024

According to an article titled ‘Why are we still seeing gaps in women’s heart care’ by Hayden E. Klein, published on ‘The American Journal of Managed Care’ on October 15, 2024, women remain underrepresented in heart disease trials, thus affecting the generalizability of findings due to sex-based differences.  For years, women were underrepresented in cardiovascular

Bridging the Gender Gap: Addressing Women’s Underrepresentation in Cardiovascular Research, American Journal of Managed Care, October 15, 2024 Read Post »

Full transcript of the PVRI live webinar on “Debunking myths about Lung Transplantation”, September 25, 2024, now available and translatable in 50 languages!

The Pulmonary Vascular Research Institute (PVRI) organised a patient-directed webinar on “Debunking Myths of Lung Transplantation” on September 25, 2024. This was an outstanding webinar: the explanations were exceptionally clear and delivered in easy-to-understand language, covering every step of the transplant journey—from getting listed and preparing for surgery, through the operation and immediate post-op, to

Full transcript of the PVRI live webinar on “Debunking myths about Lung Transplantation”, September 25, 2024, now available and translatable in 50 languages! 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 »

Pulmonary arterial hypertension: A practical roadmap from diagnosis to treatment, Prof. Jean-Luc Vachiéry and Prof. Manreet Kanwar, Touch Respiratory

In an insightful discussion organised by Touch Respiratory, an E-Learning Provider , Prof. Jean-Luc Vachiery and Prof. Manreet Kanwar consider the state of the art in pulmonary arterial hypertension, including disease diagnosis, risk stratification, and key considerations for optimizing treatment and patient care in an evolving therapeutic landscape. Prof. Manreet Kanwar is Co-Director, Division of

Pulmonary arterial hypertension: A practical roadmap from diagnosis to treatment, Prof. Jean-Luc Vachiéry and Prof. Manreet Kanwar, Touch Respiratory Read Post »

Video recording of the ERN ReCONNETT webinar on the screening and treatment of systemic sclerosis-association pulmonary arterial hypertension now available, Prof.s Erich Hachulla and Olivier Sitbon

The video recording of the latest ERN ReCONNET webinar on the screening and treatment of systemic sclerosis-associated pulmonary arterial hypertension is now available at this link Guest speakers were Prof. Eric Hachulla from the Lille University Hospital, France and Prof. Olivier SITBON from Hôpital Bicêtre in Le Kremlin – Bicêtre, France, moderated by Prof. Smith

Video recording of the ERN ReCONNETT webinar on the screening and treatment of systemic sclerosis-association pulmonary arterial hypertension now available, Prof.s Erich Hachulla and Olivier Sitbon Read Post »

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