Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, pursuant to the Answer of 9 November 2023 to Question 346 on Cystic Fibrosis: Drugs, whether her Department plans to measure the long-term health outcomes of the cohort of people with cystic fibrosis who have been treated with Orkambi, Symkevi or Kaftrio through the NHS.

Long-term health outcomes of the cohort of people with cystic fibrosis who have been treated with Orkambi, Symkevi or Kaftrio through the National Health Service are collected by the UK Cystic Fibrosis Registry.

Almost all people with cystic fibrosis in the United Kingdom consent to clinical teams submitting data on an annual basis about their medications including cystic fibrosis transmembrane conductance regulator (CFTR) modulator therapy and their clinical outcomes to the UK Cystic Fibrosis Registry, which publishes an annual report. Under the commercial arrangement with Vertex for CFTR modulator therapies real-world evidence is also collected.