New Research Project for Adults who have SMA and Parents / Caregivers of those aged 2-18 years

11 October 2021

Liberating Research is a patient research community working on behalf of a pharmaceutical company to organise a piece of market research where they are looking to speak to people with Spinal Muscular Atrophy (SMA) and caregivers / parents of people living SMA. 

The aim of this study is to understand better the everyday life experiences and needs of people with SMA, e.g. how people with SMA manage symptoms and what information is available for both patients and carers. Based on this study, ideas will be developed on how people with SMA can be better supported in their everyday life.

This study is for:

  • Parents / Legal Guardians / Caregivers of People with SMA Type 1, 2 or 3 between the ages of 2-18 years old or
  • People with SMA Type 1, 2 or 3 aged 18+

Participants will be asked to complete a 60-minute telephone interview (access to a computer/tablet/laptop with an internet connection is required). Everyone who participates will be paid £80 as a token of appreciation for their time and opinion, with 10% (or more if they wish) donated to their choice of Liberating Research's registered health charities. 

To find out more, email Caroline Walter: or phone 0208 004 8161.

Sign up here

Closing date is 4th November 2021.