Jen Cueva is both a pulmonary hypertension patient and a nurse by training, which gives her unique insights into the condition and on how it affects day to day life. Writing for the latest edition of Pulmonary Hypertension News, she explains how living in the present moment has done wonders for her well-being. Instead of […]
The UK Pulmonary Hypertension Association (PHA UK) asked the community what they wanted to know about how artificial intelligence might affect diagnosis and management of pulmonary hypertension, and then put their questions to Dr Andy Swift, a Cardiothoracic Radiologist working with the Sheffield Pulmonary Vascular Disease Unit. Here is the link to the video
The “European Society of Cardiology quality indicators for the care and outcomes of adults with pulmonary arterial hypertension” were published on the European Journal of Heart Failure on March16, 2023. The indicators may be used to quantify and improve adherence to guideline-recommended clinical practice and improve patient outcomes. Quoting Gergely Meszaros, pulmonary hypertension patient advocate
HTaPFrance held its 5th Pulmonary Hypertension Patient Conference from March 10-12, 2023, in Valpré-Lyon. The Conference, which takes place every 3 years, was delayed because of the pandemic, and all the participants were therefore delighted to be able to come together again. The strikes in France made it a bit more complicated for some speakers
A study titled “Can self-compassion help us better understand the impact of pulmonary hypertension on those with the condition and their carers? A cross-sectional analysis” was recently published on Pulmonary Circulation. It was conducted on adults with pulmonary hypertension (n = 65) and caregivers (n = 29), who completed self-report measures on demographic and clinical factors, anxiety, depression, self-compassion,
Commentary by Pisana Ferrari There is a huge amount of hype at the present moment around “ChatGPT”, a natural language processing model developed by OpenAI. ChatGPT interacts in a conversational way and replies to questions from users by tapping into the gigantic amounts of data, vocabulary and information that has been “fed” into it by
Nonprofit Team PHenomenal Hope launched its new educational website “Learn Live Breathe PH” on Rare Disease Day, February 28, 2023. Written by experts in the field the platform was created to help pulmonary hypertension patients navigate the complexities of living with this chronic illness and feel empowered by relevant, scientific information. The website provides guidance
Taking place in February to mark the occasion of Rare Disease Day, the EURORDIS (European Organisation for Rare Diseases) Black Pearl Awards celebrates the inspirational qualities of people living with a rare disease along with those who go that extra mile to make a difference to their lives. The black pearl symbolises these unique individuals,
This research award grants up to $65,000 for one year and supports junior pulmonary hypertension scientists. Proposals must be pulmonary hypertension related research projects that have been favourably reviewed for a National Institutes of Health Early Career Award (K award) but not funded. The award provides bridge funding so the project can generate sufficient preliminary
The aim of the SPHERe study is to test the clinical and cost-effectiveness of a supervised exercise rehabilitation intervention with psychosocial support compared to best practice usual care for people with pulmonary hypertension in the community/outpatient setting. The SPHERe study is the first multi-centre clinical randomised controlled trial (RCT) to assess the clinical and cost
This Phase 1 study evaluated efficacy/safety of inhaled single-dose MK-5475, an investigational, small-molecule stimulator of soluble guanylate cyclase designed for inhaled delivery via a dry-powder inhaler device, in participants with pulmonary arterial hypertension. The findings reveal that treatment with inhaled single-dose MK-5475 reduced pulmonary vascular resistance and increased pulmonary blood volume. Compared to the placebo, MK-5475 was
The main stakeholders in pulmonary hypertension care, a brief summary Author: Pisana Ferrari Last updated December 13, 2024 The following is a concise overview of key stakeholders in the field of pulmonary hypertension care at a European and international level. This list serves as a starting point and will be regularly updated to reflect the
An interesting summary of the key ten take home messages of the ESC/ERS clinical guidelines for the diagnosis and treatment of pulmonary hypertension by six members of the Task Force who developed them (2020-2022). Features a useful infographic. Collaboration with patient associations is recommended in commandment n°10! A pdf version of the article can be
With this survey the EPF Youth Group (YG) of the European Patients Forum (EPF) aims to collect key information on the importance and impact of young patient’s involvement in patient organisations. It is not always easy to involve young patients in patient organisations, as many of us who run patient associations well know. We hope this survey
RACE is a (completed) phase 3, multicentre, open-label, parallel-group, randomised controlled trial done in 23 French centres of expertise for pulmonary hypertension enrolling treatment-naive patients aged 18–80 years with newly diagnosed, inoperable chronic thromboembolic pulmonary hypertension and pulmonary vascular resistance of more than 320 dyn·s/cm5. A summary of the article is available on The Lancet
On October 14, 2022, the European Medicines Agency (EMA) announced that it has recommended a marketing authorisation in the EU for Ebvallo (tabelecleucel), a medicine used to treat adults and children from 2 years of age who, after receiving an organ, or a bone marrow-transplantation, develop a blood cancer called Epstein-Barr virus positive post-transplant lymphoproliferative disease
An edition of the the Council of Europe EDQM’s annual “Newsletter Transplant” was published. It provides comprehensive information and data on donation and transplantation activities in 2021 from 79 countries worldwide. This report is the international reference in monitoring practice in donation and transplantation of substances of human origin. It is produced thanks to the
The work of two years of the Task Force in charge of the new European Society of Cardiology (ESC) and European Respiratory Society (ERS) joint Clinical Guidelines for the diagnosis and treatment of pulmonary hypertension has finally come to an end. The new guidelines were officially presented yesterday at the ESC Annual Congress in Barcelona
Clinical practice guidelines present relevant evidence to help health care professionals in making decisions about therapeutic options and include recommendations intended to optimise patient care. They are updated on a regular basis to take into account the latest evidence and practice. The European Society of Cardiology (ESC) and the European Respiratory Society (ERS) joint clinical
The European Respiratory Society (ERS)’s Annual Conference 2022 is taking place in Barcelona on September 4-6, 2022. The NEW ERS/ESC guidelines on the diagnosis and treatment of pulmonary hypertension will be presented during the congress on September 5, session 343 and a number of other sessions on PH are also planned. Browse the programme at
European Respiratory Society (ERS) Annual Conference 2022, September 4-6, 2022 Read Post »
