SMA and Screening: The Views of Families - The Imagining Futures Research

You can read the report in full here.

Alternatively you can click through to sections about the report:

Why the Project was Set Up

How the Project was Structured

What the Survey Covered

Who Responded to the Survey

What were the Attitudes to Screening and SMA?

Strengths and Weaknesses of the Survey


  • Read the original article here
  • You can follow the project as it continues to develop here or follow Felicity on twitter: @imaginingfuture
  • The first paper from the Imagining Futures study has now been published in the American Journal of Medical Genetics. You can download this here.
  • Another paper has been published on the study, this one focusing on the newborn screening results.
  • SMA news today published an article on the research here.
  • In June 2017 Felicity was gathering new data from families affected by haemophilia, thalassemia, cystic fibrosis and fragile-X in order to explore how different/similar they are to the SMA data.

If you have any feedback or comments relating to the Imagining Futures research project, please email Felicity Boardman (Warwick University) directly:

If this research has raised any issues or emotions for you and you would like to speak to a member of the Support Services Team at SMA UK, then please phone us on: 01789 267 520 or email: