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Are you interested in taking part in two telephone/video interviews to discuss your experience of Spinal Muscular Atrophy (SMA) and to help us to understand what an important change in physical ability would be?

Adelphi Values are looking for:

Individuals living with SMA

  • Aged 12-60 years old from the United Kingdom (UK) and United States (US)
  • With a confirmed diagnosis of SMA and are ambulant (able to walk)

Caregivers of individuals living with SMA

  • Aged 18 years or over from the UK and US
  • Who care for an individual who is 2-60 years old with a confirmed diagnosis of SMA and are ambulant (able to walk)

The interviews:

Before the interviews you will be asked to fill in a form with some questions about yourself and a questionnaire used by doctors to assess physical ability in SMA. The aim of the interviews is to understand what changes on the questionnaire would be important and how these changes would impact daily life.

You will be invited to take part in two 60-minute interviews (with breaks as needed), approximately 3-4 months apart.

You will receive £100/$110 for each interview you participate in.

If you are interested or would like further information, please contact:
Telephone: 01625 578200

Download study invitation letter >