Artificial intelligence applied to chest X-rays may have the potential to detect pulmonary hypertension associated with congenital heart disease (PAH-CHD), CHEST Journal, June 18, 2025

Pulmonary hypertension (PH) is hard to diagnose, especially in places with limited medical resources, but catching it early is crucial for treatment. A group of researchers from China conducted a retrospective cohort study with 4,576 patients, including 2,288 pulmonary hypertension cases, who underwent chest X-rays (CXR) followed by right heart catheterization (RHC) or transthoracic echocardiography […]

Artificial intelligence applied to chest X-rays may have the potential to detect pulmonary hypertension associated with congenital heart disease (PAH-CHD), CHEST Journal, June 18, 2025 Read Post »

Recording of May 15, 2025 European Patients’ Forum webinar on understanding patients’ rights in the European Health Data Space (EHDS) now available

On 15 May 2025, the European Patient Forum (EPF) hosted a webinar to inform patients, health professionals, researchers, and other stakeholders about the key aspects of the European Health Data Space (EHDS). The webinar focused on patients’ rights and the practical changes the regulation introduces. The recording is now available at this link Photo credit:

Recording of May 15, 2025 European Patients’ Forum webinar on understanding patients’ rights in the European Health Data Space (EHDS) now available Read Post »

The Role of Telehealth in Pulmonary Arterial Hypertension (PAH) Management: Benefits, Barriers, and Solutions, Pulmonary Circulation, June 9, 2025

The use of remote healthcare services expanded significantly during the COVID-19 pandemic, promoting distant patient care management. Telehealth may be effective in managing patients with pulmonary arterial hypertension (PAH), due to its use in the management of other chronic diseases. However, evidence for telehealth use in pulmonary arterial hypertension is limited to a few small

The Role of Telehealth in Pulmonary Arterial Hypertension (PAH) Management: Benefits, Barriers, and Solutions, Pulmonary Circulation, June 9, 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 »

Defining “patient engagement” and distinguishing between individual empowerment and systemic partnership and advocacy, Sara Riggae, May 20 2025

Sarah Riggae is a researcher and educator who suffers from Parkinson’s disease,  In a recent article on her blog she defines what is meant by “patient engagement” and distinguishes between “primary” and “secondary” engagement.  Short summary: Primary Patient Engagement focuses on individual patient empowerment in their own healthcare journey. This includes: It’s essentially about patients having

Defining “patient engagement” and distinguishing between individual empowerment and systemic partnership and advocacy, Sara Riggae, May 20 2025 Read Post »

Physical Activity, Sleep, and Quality of Life in Pulmonary Arterial Hypertension: Novel Insights From Wearable Devices, Pulmonary Circulation, April 16, 2025

A study published in Pulmonary Circulation on April 16, 2025 investigated whether Fitbit wearable devices can provide meaningful clinical information about activity and sleep patterns in pulmonary arterial hypertension (PAH) patients. A total of 110 participants completed the 12-week baseline monitoring period. The cohort was median age 52.7 years (IQR: 40.9–60.5), female predominant (84% female),

Physical Activity, Sleep, and Quality of Life in Pulmonary Arterial Hypertension: Novel Insights From Wearable Devices, Pulmonary Circulation, April 16, 2025 Read Post »

How tech improvements can benefit the chronic illness community, a testimony from Anna Jeter for Pulmonary Hypertension News, March 17, 2025

Anna Jeter, author of a recent article for Pulmonary Hypertension News, underwent a heart and lung transplant in 2018, and has since embraced smartwatch technology, and discovered valuable health management applications: Her smartwatch and phone helps track: Additional technology benefits include: Anna says she is thankful to live in a time of technological advancement that

How tech improvements can benefit the chronic illness community, a testimony from Anna Jeter for Pulmonary Hypertension News, March 17, 2025 Read Post »

A large-scale randomised controlled trial in Taiwan reveals that the use of an artificial intelligence-enabled electrocardiogram alert system can significantly reduce mortality in hospitalized patients, Nature Medicine

This article on the use of an artificial intelligence alert system is not new but it was mentioned during the recent European Society of Cardiology CRT – Cardiovascular Round Table – on the them of AI in cardiovascular care, which took place on March 26-27, 2025 (link) The primary clinical hypothesis of this randomised controlled

A large-scale randomised controlled trial in Taiwan reveals that the use of an artificial intelligence-enabled electrocardiogram alert system can significantly reduce mortality in hospitalized patients, Nature Medicine Read Post »

Patient participation at the 2nd European Society of Cardiology CRT, Cardiovascular Round Table, on “How can cardiologists take the lead in moving AI forward”, Guermantes, France, March 26-27, 2025

The European Society of Cardiology‘s 2025 CRT – Cardiovascular Round Table – took place on 26-27 March in Guermantes, France. This gathering united approximately 80 participants representing the scientific community, pharma and tech industries, and patient advocates, to explore the transformative theme “Working together to move forward AI in cardiology.” The meeting carefully balanced informative

Patient participation at the 2nd European Society of Cardiology CRT, Cardiovascular Round Table, on “How can cardiologists take the lead in moving AI forward”, Guermantes, France, March 26-27, 2025 Read Post »

Advancing pulmonary hypertension care at the ERN-Lung Annual Board meeting, Paris, March 24-25, 2025

The annual Board meeting of the ERN-LUNG – European Reference Network for rare respiratory diseases, took place in Paris on March 24-25, 2025, with over 100 participants, not only from the EU but also UK, US and Canada. Two European patient representatives, Pisana Ferrari and Hall Skaara, (2nd and 3rd from left in the cover

Advancing pulmonary hypertension care at the ERN-Lung Annual Board meeting, Paris, March 24-25, 2025 Read Post »

Living with Pulmonary Arterial Hypertension: Early Diagnosis, Patient Advocacy, and the Role of Technology, Maleen Fischer, Cambridge Network News, electronRx blog

Maleen Fischer, whose “blue lips” in infancy were dismissed by doctors for nearly four years before receiving a diagnosis of pulmonary arterial hypertension at age four. In a recent article for Cambridge Network News and in a blog for electronRx she shares how despite years on continuous IV medication and isolation during childhood and adolescence,

Living with Pulmonary Arterial Hypertension: Early Diagnosis, Patient Advocacy, and the Role of Technology, Maleen Fischer, Cambridge Network News, electronRx blog Read Post »

Interview with Louise Bouman, Chair of the Dutch Pulmonary Hypertension Association on the importance of patient involvement in healthcare policies and drug development

Louise Bouman, Chair of the Dutch Pulmonary Hypertension Association, was recently invited to share her experience as a EUPATI Nederland fellow. Pulmonary Hypertension: Rare and Complex In pulmonary hypertension, blood pressure in the lung vessels is too high due to narrowing of the pulmonary arteries. This overloads the right heart chamber, making it increasingly difficult

Interview with Louise Bouman, Chair of the Dutch Pulmonary Hypertension Association on the importance of patient involvement in healthcare policies and drug development Read Post »

Deep Learning-Based Pulmonary Hypertension Screening Algorithm Using a Digital Stethoscope, Journal of the American Heart Association, February 4, 2025

Pulmonary hypertension often goes undiagnosed in part because of low suspicion and screening tools not being easily accessible. A deep learning study, published on the Journal of the American Heart Association, has developed a novel screening method for pulmonary hypertension using digital stethoscope recordings (phonocardiograms). By analyzing approximately 6,000 PCG recordings with echocardiogram data, researchers

Deep Learning-Based Pulmonary Hypertension Screening Algorithm Using a Digital Stethoscope, Journal of the American Heart Association, February 4, 2025 Read Post »

Launch of a new EURORDIS platform with resources to help plan and implement patient partnerships in healthcare networks

The newly launched EURORDIS Patient Partnership Hub brings together resources that facilitate patient-clinician collaboration within the European Reference Networks (ERNs) in one convenient location. From templates and best practice webinars to guides and factsheets, everything is available in a single place. Explore the Patient Partnership Hub at this link and watch the demo webinar here

Launch of a new EURORDIS platform with resources to help plan and implement patient partnerships in healthcare networks Read Post »

AI Model for Depression Diagnosis Developed in Finland: A Potential Breakthrough for Accessible and Early Mental Health Care

Researchers at Kaunas University of Technology, Finland, have developed an artificial intelligence model that combines speech and brain activity data to diagnose depression with an accuracy of 97.53 percent. This innovative approach, detailed in an article for Brain Sciences dated October 15, 2024, leverages both electroencephalogram signals and voice recordings to assess emotional states more

AI Model for Depression Diagnosis Developed in Finland: A Potential Breakthrough for Accessible and Early Mental Health Care Read Post »

Organizing health information is crucial to rare disease management, Jen Cueva, Pulmonary Hypertension News, December 4, 2024

During a hospital stay described in her December 4, 2024 article for Pulmonary Hypertension News, Jen Cueva, a pulmonary hypertension patient, discovered potentially dangerous errors in her medication records. Her experience, detailed in “Organizing health information is crucial to rare disease management,” demonstrates why maintaining accurate, up-to-date medication lists is essential for patient safety, particularly

Organizing health information is crucial to rare disease management, Jen Cueva, Pulmonary Hypertension News, December 4, 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 »

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 »

Beyond Provision: A Multidimensional View of Access to Health Care for Rare Diseases, The Lancet Global Health, October 2024

Access to health care is a broad and complex topic that warrants a clearer definition. What does is actually mean? Is it simply the provision of health services and medicines? An article titled “Access in the rare diseases landscape”, published in The Lancet Global Health October 2024 edition, delves into the different aspects that define

Beyond Provision: A Multidimensional View of Access to Health Care for Rare Diseases, The Lancet Global Health, October 2024 Read Post »

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