PHAROS – severe Pulmonary Hypertension mAnagement acROSs Europe

About PHAROS

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.

Specific aims

• To establish a structure able to coordinate future collaborative research on PH, such as pragmatic trials concerning care organisation or less prevalent PH subgroups.
• To facilitate and accelerate the translation of basic research findings to the clinic.
• To develop the collaborative projects, public (EU) and private (industry) funding will be raised with the support of the ERS Research Agency.
• To make available a common platform for PH registries (PAHTool); to implement interoperability between PAHTool and existing (national or centre) systems; to collect a common repository of registries for collaborative research.
• To do an inventory of centre expertise (data from ERN-LUNG), access to advanced therapies in Europe (prostanoids and LTX), use of PROs (PAH-SYMPACT or emphasis-10) with special interest for care pathways and cross-border care.
• To study progressive right heart failure in pulmonary hypertension (to improve and structure the management of end-stage RV failure; new potential therapeutic targets on RV…)
• To study severe PH in patients with lung diseases (unify characterization/assessment of Group 3 PH patients between centres; to know better prevalence; multicentre RCT of targeted PAH treatment …)

Stakeholders

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.

CONTACT

If you are interested in more information about CRC PHAROS, please contact scientific@ersnet.org.