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Information for Health Professionals

Thank you for considering taking part in this study. On this page you will find information about the survey and interviews for Health Professionals involved in the care and support of people affected by SMA.

Click here to go to the survey for Health Professionals Link opens in a new window

This survey is open to any health professional caring for or supporting people and families affected by SMA, which may include (but is not limited to):

...paediatricians, neurologists, orthopaedic surgeons, anaesthetists, pulmonologists, geneticists, GPs, palliative care doctors and nurses, specialist and junior doctors, nurses (including specialist nurses, children's nurses and nurse practitioners), health visitors & midwives, psychologists, counsellors, physiotherapists, occupational therapists, dieticians, speech and language therapists, care assistants....


We would like to interview some health care professionals to get a more detailed understanding of their views on newborn screening for 5q Spinal Muscular Atrophy, and how screening for SMA might affect them professionally. You do not need to know anything about current newborn screening policy.

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 have experience of caring for/supporting people affected by SMA.

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