The new US Food and Drug Administration (FDA)’s guidance paper on incorporating voluntary patient preference information over the total product cycle, and what It means for patient organisations, March 30, 2026

Jan Geissler, Founder and CEO of Patvocates, a think tank, consultancy and social enterprise on patient advocacy and patient engagement in research, has analysed the Food and Drug Administration (FDA)’s newly issued guidance paper titled “Incorporating Voluntary Patient Preference Information over the Total Product Life Cycle Guidance for Industry, Food and Drug Administration Staff, and […]

The new US Food and Drug Administration (FDA)’s guidance paper on incorporating voluntary patient preference information over the total product cycle, and what It means for patient organisations, March 30, 2026 Read Post »

The Alliance for Pulmonary Hypertension participates in the Annual Board Meeting of the European Reference Center for Rare Respiratory Diseases (ERN-LUNG), in Paris, March 23-24, 2026

On 23–24 March 2026, the Alliance for Pulmonary Hypertension attended the Annual Board meeting of ERN-LUNG, the European Reference Network for Rare Respiratory Diseases, in Paris. The Alliance was represented by Louise Bouman, Board member of the organisation and member of the ERN-LUNG E-PAG (European Patient Advisory Group). The meeting brought together healthcare professionals, researchers,

The Alliance for Pulmonary Hypertension participates in the Annual Board Meeting of the European Reference Center for Rare Respiratory Diseases (ERN-LUNG), in Paris, March 23-24, 2026 Read Post »

Ensuring cultural relevance in pulmonary arterial hypertension QOL questionnaire adaptation: the Thai emPHasis-10 case, Journal of Patient-Reported Outcomes, February 20, 2026

The emPHasis-10 questionnaire is a specialized tool for assessing health-related quality of life in pulmonary arterial hypertension patients. A comprehensive validation process was undertaken by researchers in Thailand including forward-backward translation, expert content validity assessment using Item-Objective Congruence (IOC) index by five specialists, and reliability testing with 20 Thai PAH patients using both internal consistency

Ensuring cultural relevance in pulmonary arterial hypertension QOL questionnaire adaptation: the Thai emPHasis-10 case, Journal of Patient-Reported Outcomes, February 20, 2026 Read Post »

The European Reference Network for Rare Lung Diseases (ERN Lung) to implement universal online Patient-Reported Outcome Measure, ERN-Lung Newsletter, Issue 41, December 2025

Patient-reported outcome measures (PROMs) capture patients’ own perspectives on their health and are crucial for improving care, yet they remain underused in clinical practice due to barriers like time constraints, language availability, and licensing costs. The European Reference Center for Rare Lung Diseases (ERN LUNG) is launching an ambitious initiative to implement a standardized PROM

The European Reference Network for Rare Lung Diseases (ERN Lung) to implement universal online Patient-Reported Outcome Measure, ERN-Lung Newsletter, Issue 41, December 2025 Read Post »

Celebrating the Alliance for Pulmonary Hypertension’s first 18 “PEP Talks” since the launch of the program in May 2025, and looking forward to many more in 2026!

The Alliance for Pulmonary Hypertension introduced its 2025 “Patients Empowering Patients” (PEP) program, designed to harness the power of peer-to-peer support, on May 5, 2025, World Pulmonary Hypertension Day. The name “PEP Talks” is a playful nod to the acronym of the “PEP” program, and it embodies the encouraging and motivational spirit of traditional pep

Celebrating the Alliance for Pulmonary Hypertension’s first 18 “PEP Talks” since the launch of the program in May 2025, and looking forward to many more in 2026! Read Post »

Patient-reported Functional Class (FC) may better reflect pulmonary hypertension burden than physician-assigned Functional Class, CHEST, November 27, 2025

A new study published recently on CHEST evaluated whether the Pulmonary Hypertension Functional Class Self-Report (PH-FC-SR)—a patient-reported version of the World Health Organisation (WHO) Functional Class—captures functional status in a way that reflects patients’ real experiences. Study Overview Eighty-nine adults with pulmonary hypertension (Groups 1–5) from the Cleveland Clinic and Mayo Clinic completed an online

Patient-reported Functional Class (FC) may better reflect pulmonary hypertension burden than physician-assigned Functional Class, CHEST, November 27, 2025 Read Post »

Making the case for advancing patient authorship and collaboration in peer-reviewed publications, Jan Geissler et Al., The Patient, July 2, 2025

Jan Geissler is the Founder and CEO of Patvocates, a consultancy and think tank on patient advocacy and patient engagement based in Riemerling, Germany. In an article he co-authored for the Springer Nature journal “The Patient” Geissler and his colleagues argue that meaningful patient involvement in healthcare research and publishing can bridge significant gaps between

Making the case for advancing patient authorship and collaboration in peer-reviewed publications, Jan Geissler et Al., The Patient, July 2, 2025 Read Post »

A review of the book “The Patient Priority”, authored by Stefan Larsson, Jennifer Clawson and Joshua Kellar, August 2025

Steven Gijssels is Chair of the Patient Expert Center in Belgium. He has recently published a review of the book “The Patient Priority” by Stefan Larsson, Jennifer Clawson and Joshua Kellar, three Boston Consulting Group consultants. The book calls for integrated care, more efficient reimbursement models, and outcome-focused evaluations of healthcare interventions. Tracking patient outcomes

A review of the book “The Patient Priority”, authored by Stefan Larsson, Jennifer Clawson and Joshua Kellar, August 2025 Read Post »

Real-life use of quality of life questionnaires in pulmonary arterial hypertension in Spain, European Journal of Cardiovascular Nursing, July 7, 2025

Despite strong recommendations to assess quality of life in pulmonary arterial hypertension patients from the World Symposia on Pulmonary Hypertension (WSPH) in 2018 and 2024, and from the 2022 European Society of Cardiology (ESC) and European Respiratory Society (ERS) joint pulmonary hypertension guidelines, this evaluation remains rarely implemented in clinical practice. This cross-sectional study of

Real-life use of quality of life questionnaires in pulmonary arterial hypertension in Spain, European Journal of Cardiovascular Nursing, July 7, 2025 Read Post »

Gaps In Access to pulmonary hypertension care and Opportunities for improvement: A multi-site qualitative study, BMC Pulmonary Medicine, July 28, 2025

A multi-site qualitative study exploring both patient and provider perspectives on access to and timeliness of pulmonary hypertension (PH) care across the full care continuum—from symptom onset through long-term management was recently published in BMC Pulmonary Medicine. Interviews with 41 participants (21 patients, 20 providers) at three U.S. expert pulmonary hypertension centers revealed persistent delays

Gaps In Access to pulmonary hypertension care and Opportunities for improvement: A multi-site qualitative study, BMC Pulmonary Medicine, July 28, 2025 Read Post »

The Pulmonary Hypertension Global Patient Survey: understanding the experiences and perspectives of patients, European Respiratory Journal Open Research 2025

The key findings from the Pulmonary Hypertension Global Patient Survey (PHGPS) adult cohort of 3,329 patients have been published in the ERJ Open Research 2025, highlighting the achievements, shortcomings & regional disparities of clinical care & research globally. The Pulmonary Hypertension Global Patient Survey represents the most extensive survey of its type in the pulmonary

The Pulmonary Hypertension Global Patient Survey: understanding the experiences and perspectives of patients, European Respiratory Journal Open Research 2025 Read Post »

Seven Actions Towards Advancing Patient Authorship and Collaboration in Peer-Reviewed Publications, The Patient, July 2, 2025

Jan Geissler, Founder and CEO of Patvocates, is co-author of an article titled “Seven Actions Towards Advancing Patient Authorship and Collaboration in Peer-Reviewed Publications” published on July.2, 2025 on The Patient. In a post for LinkedIn Jan says that patients and patient advocates are often missing from the author lists of scientific publications, even if

Seven Actions Towards Advancing Patient Authorship and Collaboration in Peer-Reviewed Publications, The Patient, July 2, 2025 Read Post »

Computer modeling used in study to simulate long-term mortality/morbidity in patients with pulmonary arterial hypertension If sotatercept Is delayed, Advances in Therapy, June 17, 2025

Researchers used computer modeling to compare immediate versus delayed (2-year) treatment with sotatercept, a new pulmonary arterial hypertension medication, to predict lifetime outcomes. Study Method: Building on the findings of the phase 3 STELLAR trial on sotatercept the authors of the study refer to a population health model which was recently published assessing the long-term

Computer modeling used in study to simulate long-term mortality/morbidity in patients with pulmonary arterial hypertension If sotatercept Is delayed, Advances in Therapy, June 17, 2025 Read Post »

Women with pulmonary arterial hypertension rely heavily on caregivers but face major gaps in meeting their support needs, The American Journal of Managed Care, June 18, 2025

A new study presented at the American Thoracic Society 2025 Conference reveals that women with pulmonary arterial hypertension (PAH) rely heavily on family caregivers but face significant gaps in meeting their support needs. Methodology Researchers conducted a 45-minute web-based quantitative survey across multiple countries, targeting women aged 21-50 with pulmonary arterial hypertension. Patient-reported outcome measures

Women with pulmonary arterial hypertension rely heavily on caregivers but face major gaps in meeting their support needs, The American Journal of Managed Care, June 18, 2025 Read Post »

Selection of patient-reported outcome measures in pulmonary arterial hypertension clinical trials, a systematic review and metanalysis, European Respiratory Review, May 14, 2025

Health-related quality of life (HRQoL ) is an important outcome measure in pulmonary arterial hypertension research, but an evaluation of which patient questionnaires work best had not been done up to now. Also, different studies use different questionnaires, making it hard to compare results. A systematic review (PROSPERO ID: CRD42024484021) was conducted following Preferred Reporting

Selection of patient-reported outcome measures in pulmonary arterial hypertension clinical trials, a systematic review and metanalysis, European Respiratory Review, May 14, 2025 Read Post »

Only a minority of US patients receive pulmonary arterial hypertension-specific prescriptions from a pulmonary hypertension center, reveal the findings of a recent study

The authors of this article, published on the American Journal of Respiratory and Critical Care Medicine on January 13, 2025 say that guidelines recommend patients with pulmonary arterial hypertension be referred to pulmonary hypertension centers, but little is known about where care is actually delivered in the United States. Prescription patterns were used to estimate

Only a minority of US patients receive pulmonary arterial hypertension-specific prescriptions from a pulmonary hypertension center, reveal the findings of a recent study Read Post »

UK Pulmonary Hypertension Association Chair Dr Iain Armstrong explains what happens next now that sotatercept has been approved in the UK, YouTube

The new pulmonary arterial hypertension treatment sotatercept was approved for use in the UK by the Medicines and Healthcare products Regulatory Agency (MHRA) at the end of December 2024 – but that doesn’t mean it can now be prescribed. In this short video, the Chair of the UK Pulmonary Hypertension Association Dr Iain Armstrong explains

UK Pulmonary Hypertension Association Chair Dr Iain Armstrong explains what happens next now that sotatercept has been approved in the UK, YouTube Read Post »

Challenges in implementing the new European clinical guidelines in Central and Eastern Europe: a review from the Polish Heart Journal 

An article published in the Polish Heart Journal on December 23, 2024, titled “Emerging therapies and new directions in the treatment of pulmonary arterial hypertension” points out that the integration of novel therapeutic protocols into everyday medical practice faces various obstacles, particularly when considering regional differences in implementation. The paper draws insights from medical experts

Challenges in implementing the new European clinical guidelines in Central and Eastern Europe: a review from the Polish Heart Journal  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 »

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