The future of lung disease research discussed at ERS Presidential Summit 2019

ELF patient representatives attend the ERS Presidential Summit 2019 to discuss the future of research on lung disease

The ERS Presidential Summit 2019 took place in Hannover this year. This annual Summit is an occasion where the President of the ERS, currently Prof Tobias Welte, selects a topic of political importance to the society, which is discussed at high level with the ERS leadership and the Head of the ERS Assemblies.

The topic of this year’s summit was “The future of research in respiratory medicine: unmet needs and how to address them” and gave a snapshot of each disease area, the current state of the art and future research priorities. This was followed by discussion about how these future priorities could be funded.

Patient representatives from several different ELF Patient Advisory Groups attended as a group for the first time, including representatives from bronchiectasis, sarcoidosis and the SHARP clinical research collaboration (CRC). This reflects how important patient input is to the work of the ERS. The sessions were technical and, at times, difficult to follow, but all of those who attended contributed and asked questions of the presenters.

The biggest positive for the patients attending was the opportunity in breaks to discuss their unmet needs and how they felt this should be addressed. Common themes in many conditions, such as breathless, fatigue and exacerbations, were highlighted as areas that needed to be addressed.

Breakout workshops also allowed all those attending to discuss issues such as pulmonary rehabilitation and clinical trials.

ELF Chair, Isabel Saraiva, presented at the summit, explaining how ELF has been supporting ERS to include patients in research. As a follow on to the summit, ELF and the patients in attendance plan to put together a paper outlining some of the new and exciting ways that patients are helping to address unmet needs in different contexts across the globe. 

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