Extract
Involving patients in the design, conduct and dissemination of clinical research, clinical guidelines and education projects is highly beneficial, and is a priority for funders and societies such as the European Respiratory Society (ERS) [1]. Bronchiectasis is a lung condition associated with chronic cough and sputum production that is rapidly increasing in prevalence in Europe [2]. It is a neglected disease, but recent initiatives including the European Bronchiectasis Registry and research network (EMBARC) and the European Union supported European Reference Network for Rare Pulmonary Diseases (ERN-LUNG) are beginning to raise the diseases profile and stimulate new research [3, 4]. Patient involvement has been, and remains, central to these projects including the recently published European bronchiectasis guidelines which were developed with patients as members of the panel [5].
Abstract
Risks of cross-infection in bronchiectasis are small, and should not currently restrict access to specialised care http://ow.ly/dkVl30hcu5p
Acknowledgements
We acknowledge the EMBARC registry steering committee, the ERN-Lung bronchiectasis core network and ERN-Lung steering committee who approved this document. Bridget Harris, Nicola Pilkington, Annette Posthumus and Thomas Ruddy are representatives of the broader EMBARC/ELF bronchiectasis patient advisory group.
Footnotes
Support statement: EMBARC is a European Respiratory Society Clinical Research Collaboration. This work has received support from the EU/EFPIA Innovative Medicines Initiative Joint Undertaking iABC grant agreement number 115721. J.D. Chalmers is supported by the GSK/British Lung Foundation Chair of Respiratory Research. Funding information for this article has been deposited with the Crossref Funder Registry.
Conflict of interest: Disclosures can be found alongside this article at erj.ersjournals.com
- Received September 23, 2017.
- Accepted November 13, 2017.
- Copyright ©ERS 2018