The European Lung Foundation (ELF)Founded by ERS in 2000, ELF brings together patients and the public with respiratory professionals to positively influence lung health.Visit the ELF site
The severe Pulmonary Hypertension mAnagement acROSs Europe (PHAROS) Clinical Research Collaboration was launched by the European Respiratory Society (ERS) in February 2019 and is centred around a true collaborative partnership with all involved stakeholders. PHAROS is proposing to establish a platform for clinical research in pulmonary hypertension (PH), in close collaboration with the European Reference Network (ERN)-LUNG.
Essential information about the clinical and scientific expertise and infrastructure across Europe was gathered during the ERN healthcare professional (HCP) selection process.
As part of the ERN objectives, an inventory of existing national and local PH registries was performed, and interoperability to exchange data is under further evaluation. However, there is no initiative within the ERN to organise collaborative research between the 17 designated referral centres. Interaction with the PH core of the ERN-LUNG will allow the CRC to concentrate on the clinical research projects themselves, building on the ERN prerequisite of expertise and patient data collection.
The CRC will also aim to raise standards of research and harmonise standard operating procedures across the network of centres in Europe, working together with patients to prioritise their needs.
The PHAROS Steering Committee is comprised of two CRC chairs, clinician researchers, an expert in translational research and one patient representative from the ERN-LUNG PH network.
The Stakeholder Board is at the centre of PHAROS and combines a strong and worthy partnership between the different stakeholders e.g Steering Committee, national centres leads, funding partners, scientific experts and the Patient Advisory Group.
If you are interested in more information about CRC PHAROS, please contact firstname.lastname@example.org.