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We brought together individuals with personal experience of bronchiectasis from across Europe to form a patient advisory group to help guide the direction of the project and to contribute their experiences and views. They are pictured in the main section below.
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To help identify research priorities in bronchiectasis, the European Lung Foundation collected 711 questionnaires from adults with bronchiectasis and their caregivers from 22 European countries. These research priorities were integrated with priorities identified by European bronchiectasis medical experts to make 55 priorities.
A consensus statement was published as a result: 'Research priorities in bronchiectasis: a consensus statement from the EMBARC Clinical Research Collaboration'.
We also have a reference panel made up of around 50 individuals with personal experience of bronchiectasis who we consult with by email on different aspects of the bronchiectasis projects we are working on.
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This project was supported by, and worked closely with members of EMBARC, a pan-European network which promotes clinical research and education in bronchiectasis. See details of the medical experts involved lower down this page.
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This project
This patient priorities project has a focus on bronchiectasis.
We wanted to raise awareness of what matters most to people with experience of bronchiectasis across Europe and to develop patient-led information and guidance based on these findings. This website is one of the end results of the project.
What we did
Patient advisory group
People with a diagnosis of bronchiectasis and caregivers of people with bronchiectasis helped to steer the direction of this project through our patient advisory group. We also have a patient reference panel to consult more widely with made up of over 50 individuals from 12 countries.
Members of our bronchiectasis patient advisory group
We would also like to recognise the contribution of Rena Spinks, an individual with bronchiectasis, who was part of the patient advisory group and who died in 2016.
Marta Almagro
Spain
Sue Barker
United Kingdom
Bridget Harris
United Kingdom
Nicola Pilkington
United Kingdom
Annette Posthumus
Netherlands
Thomas Ruddy
Germany
Alan Timothy
United Kingdom
Medical experts
Healthcare professionals with expertise in bronchiectasis helped to ensure the information on this website is medically accurate.
Dr Stefano Aliberti MD
Associate Professor and Consultant Department of Pathophysiology and Transplantation, University of Milan, Italy
Professor James Chalmers
Ninewells Hospital and Medical School Dundee, Scotland, UK
Dr Pieter Goeminne, MD PhD
A.Z. Nikolass, Sint-Niklaas, Belgium
Dr Charles Haworth MD FRCP
Consultant Respiratory Physician, Director Cambridge Centre for Lung Infection, Papworth Hospital, UK
Dr Michael Loebinger MA FRCP PhD
Consultant Respiratory Medicine, Royal Brompton Hospital, London, UK
Dr Eva Polverino MD PhD
Senior investigator at Vall D'Hebron Research Institute - Pulmonologist; Barcelona, Spain
Dr Montserrat Vendrell PhD
Consultant Respiratory Medicine, Dr Trueta University Hospital. Girona. Catalonia. Spain.
Partners
Thanks to our partners and collaborators who helped us to develop the information for this website with special thanks to EMBARC for inputtnig at all stages, CHSS for giving us permission to adapt their bronchiectasis booklet and PCD Family Support Group UK for assisting with the parent information.
