1. CF transplant pathway survey

Going through the transplant process can be a difficult time for people with cystic fibrosis (CF), their partners, their families and their carers. We are working to find ways to improve the lung transplant journey. To do this, we need your feedback, whether you’re a person with cystic fibrosis, a family member, partner or carer.

Please complete the survey below to tell us about your experience at your CF centre. All of the data collected is anonymous and individual responses or centres won’t be identified in any of the reports.    

This survey should take 20 minutes or less to complete. 

The Cystic Fibrosis Trust is leading a new qualitative study to help us better understand the pathway to lung transplant for people with CF in the UK.

This work has been designed in collaboration with Johns Hopkins University in the United States, and the adult service at the Royal Brompton Hospital and builds on a US version of the study.

Your response is very much appreciated.  

For questions and comments regarding this survey, please contact Claire Francis, project lead at policy@cysticfibrosis.org.uk.

Thank you in advance, 

Professor Stuart Elborn CBE
Clinical Professor of Respiratory Medicine and Centre Director for Adult Cystic Fibrosis at the Royal Brompton Hospital, London.

Dr Keith Brownlee
Director of Impact at the Cystic Fibrosis Trust

Christian Merlo, MD, MPH
Associate Professor of Medicine and Epidemiology, Johns Hopkins University

Natalie E. West, MD, MHS
Assistant Professor of Medicine, Johns Hopkins University

Erin Tallarico, RN, BSN
Director, Lung Transplant Initiative, Cystic Fibrosis Foundation

Abigail Thaxton, CCRP      
Sr. Research Program Coordinator, Johns Hopkins University