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 1 July 2019 to Question 269610 on Spinal Muscular Atrophy: Drugs, what the maximum length of time is for the period of further data collection.

The Managed Access Agreement (MAA) for nusinersen for treating spinal muscular atrophy states that the data collection will be in place for a minimum of three years and up to the automatic expiry of the MAA on the fifth anniversary, unless the MAA expires earlier as a result of the publication of the National Institute for Health and Care Excellence’s reappraisal of nusinersen.