Cereno Scientific announced on January 31, 2024 that it has received approval from the US Food and Drug Administration (FDA) for expanded access to the investigational drug CS1 in the ongoing Phase II trial for pulmonary arterial hypertension (PAH). This program allows patients who completed the Phase II to continue CS1 therapy. Positive outcomes from […]
“EXPOSURE” (EUPAS19085) is an observational study describing the characteristics, treatment patterns, and outcomes of patients with pulmonary arterial hypertension initiating a new specific therapy in Europe/Canada. In total, 1.944 patients with follow-up information were included. Most study patients were female with WHO functional class II/III symptoms and idiopathic or connective tissue disorder-associated pulmonary arterial hypertension.
The authors of this article, titled “How your patient is really feeling: the emotional hinterland of a cardiac diagnosis“, published on the European Heart Journal on January 8, 2024, focus on the impact of receiving and living with a cardiac disease diagnosis, and in particular to the psychosocial aspects, which, they say, continue to be underrepresented in
Prof. Adam Torbicki’s presentation is titled “Access to care for pulmonary arterial hypertension and chronic thromboembolic pulmponary hypertension”. It can be viewed at this link on Vimeo (you need to register on Vimeo to see it) Prof. Jean-Luc Vachiéry’s presentation is titled “Drug development and clinical trials“. It can be viewed at this link on
It was a great honour to be invited to speak at the ERN-LUNG webinar on quality indicators for adult pulmonary arterial hypertension care, which took place on December 8, 2023, where I was asked to explain why these are important from a patient perspective. The webinar referenced an article in the European Journal of Heart
On December the 8th 2023 the European Reference Network for Rare Lung Diseases (ERN-Lung) hosted a webinar titled “Quality Indicators in Healthcare, the example of Pulmonary Hypertension”. The webinar refers to the scientific paper on quality indicators published in the European Journal of Heart Failure, in connection with the publication of the 2022 European Society
The Dutch Heart Foundation has awarded an “Established Investigator” grant to Prof. Dr. Frances de Man from the Amsterdam UMC. She is conducting research to better understand and prevent right heart failure in pulmonary hypertension. When the blood pressure in the lungs is too high (in pulmonary hypertension), the right ventricle has to work harder
The Alliance for Pulmonary Hypertension has just held the last webinar of the six-part series it launched in June 2023 exploring the innovations outlined in the 2022 joint clinical guidelines on pulmonary hypertension by the European Society of Cardiology (ESC) and the European Respiratory Society (ERS). Across these six insightful sessions, we delved into pivotal
The European Commission has launched a call for expressions of interest to represent patients’ organisations in European Medicines Agency’s (EMA) Committee for Orphan Medicinal Products (COMP). This is a very important opportunity for patients to have a role in the approval of orphan medicinal products! The call aims to fill three positions nominated by the
The European Association for Pulmonary Hypertension, PHA Europe, held its Annual European Pulmonary Hypertension Conference (APHEC) in Barcelona from 8-12 November 2023 in Castelledefels, Barcelona (Spain). The conference featured presentations by distinguished members of the scientific community (Prof. Adam Torbicki, Poland; Prof. Jean-Luc Vachiéry, Belgium; Prof Joanna Pepke-Zabka, UK; Prof. Jimmy Ford, USA; Prof. Dr.
The most familiar exercise capacity test in the field of pulmonary arterial hypertension is the 6-Minute Walk Test, where patients walk up and down a corridor for 6 minutes while their physiological parameters and distance walked are measured. This test is also used in other, different types of diseases, and Dr Joe Newman, a clinical
A recent article titled “Pulmonary arterial hypertension and COVID-19: piecing the puzzle”, published in Respiratory Medicine and Research, summarises the existing literature on the clinical presentation of COVID-19 in patients with pulmonary arterial hypertension, focusing on shared pathobiology, clinical outcomes, potential treatment strategies, and the need for further research in understanding and managing these conditions.
In the age of artificial intelligence, chat bots and automated services, our quest for empathy becomes more pressing than ever. Counterintuitively, Dr. Eric J. Topal, an American cardiologist, scientist, and best selling author, claims that artificial intelligence has the potential to enhance empathy, particularly in the vital relationship between patients and clinicians. In a recent
The European Reference Networks (ERNs) are virtual networks involving healthcare providers across Europe. They aim to facilitate discussion on complex or rare diseases and conditions that require highly specialised treatment, and concentrated knowledge and resources. The first ERNs were launched in 2017, involving more than 900 highly-specialised healthcare units from over 300 hospitals in 26 EU
Aside from the commonly observed BMPR2 gene (bone morphogenetic protein receptor 2), there are several other genes, each falling into distinct functional categories, that have been identified as contributors to pulmonary arterial hypertension development. This has led both specialized and general healthcare providers to encounter various inquiries about the necessity, methods, and potential outcomes of
The steering group of the European Society for Organ Transplant (ESOT) patients’ inclusion initiative invites European transplant patient organizations to endorse and spread the call: Monitoring health after transplantation: A call for a European effort to collect follow up data on transplant recipients and living donors. This call urges organizations dealing with transplantation to work
This survey, the first of its kind, has been designed to help improve global understandings of how pulmonary hypertension affects the lives of patients and in what ways pulmonary hypertension care needs to be improved. The survey has been written by a multidisciplinary panel of pulmonary hypertension specialists and patient group advocates from the pulmonary
A study titled “Cytokines Removal During Ex-Vivo Lung Perfusion: Initial Clinical Experience”, by researchers Boffini et al. was published in August 2023 in Transplant International. Covering a period of 10 years, from 2011 to 2020, research by has demonstrated for the first time – on an unparalleled large case series of 54 lung treatments intended
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 »
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
