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Information for participants from the SMA community

Thank you for considering taking part in this study. On this page you will find information about the survey and interviews for members of the SMA community, this includes people living with SMA, and family members of people who have (or had) SMA.


We would like to interview members of the SMA Community to get a more detailed understanding of their views on newborn screening for 5q Spinal Muscular Atrophy. You do not need to know anything about current newborn screening policy.

We would like to speak with:

Parents of children who have been diagnosed with 5q SMA (any Type) within the last 5 years. We would like to speak with parents who have a wide range of experiences, including parents of children diagnosed by symptoms, and parents of children diagnosed a birth (because of a family history of SMA).

Adults living with SMA (any type, including later-onset SMA). 

Everyone who takes part in an interview will receive a £20 shopping voucher as a thank you.

Eligibility criteria: participants must be over 18 years old, live in the UK, be able to communicate in English, and either;

  1. have SMA themselves, or,
  2. are parents to a child that has (or had) SMA (of any Type), and who was diagnosed within the last 5 years.

Interviews will be conducted online, over the phone, or in-person and will last around an hour.

If you are interested in doing an interview or you would like more information, please email the team at .

Link to Main Study Page - to see more information about the study and the researchers running it