Lung transplant in cystic fibrosis: study using linked data. v1

• Research type

  Research Study

• Full title

  Study of lung transplant in cystic fibrosis through linkage between the UK Cystic Fibrosis Registry and the UK Cardiothoracic Transplant Registry

• IRAS ID

  280873

• Contact name

  Ruth Keogh

• Contact email

  ruth.keogh@lshtm.ac.uk

• Sponsor organisation

  London School Of Hygiene and Tropical Medicine

• Clinicaltrials.gov Identifier

  22576, LSHTM Research Ethics Committee Project ID

• Duration of Study in the UK

  3 years, 0 months, 0 days

• Research summary

  Cystic fibrosis (CF) is one of the most common inherited diseases and affects around 10,500 people in the UK. The most seriously affected organ in CF is the lung and people with CF experience long-term deterioration in lung function. Lung transplantation is a treatment option for people with CF who have end-stage lung disease, with the aim being to improve both quality and quantity of life.

  This project will address unanswered questions that are key for decision-making surrounding transplantation in CF, for clinical teams, transplant teams and patients themselves. We will investigate the following:
  - how people with CF progress along the transplant pathway from joining the waiting list to transplant and to death on the waiting list or post-transplant
  - the impact of lung transplantation on life expectancy for people with CF
  - how patient characteristics are associated with the risks and benefits of lung transplant
  - how patient and donor characteristics affect post-transplant outcomes

  We will use data that has been obtained on individuals with CF though the UK Cystic Fibrosis Registry, alongside data obtained on people awaiting a lung transplant and who have received a transplant and their donors from the UK Cardiothoracic Transplant Registry (NHS Blood and Transplant). We will link the two data sources together to combine the information available on people with CF and on the transplant pathway. The UK CF Registry contains detailed data collected annually on people with CF in the UK, but does not collected detailed data on transplant. The transplant registry collects data on people waiting for transplants, their donors, and their post-transplant outcomes. The two data sets will be linked by NHS Digital. No new data will be collected as part of this study and we will use data from 1995 to 2019.

• REC name

  London - Surrey Research Ethics Committee

• REC reference

  20/LO/1006

• Date of REC Opinion

  16 Sep 2020

• REC opinion

  Favourable Opinion