Spinal Muscular Atrophy case study - our approach and recruitment method
SMA (Spinal Muscular Atrophy) is a genetic disease that affects the nervous system. There are multiple types of SMA, but it is mostly found in infants and has a high mortality rate.
Prevalence: 1 per 16,000 births (assumed)
Difficulties: The client wanted to do research in Latin and South America after doing the US. There are very few cases of SMA in most of the countries and very few treaters. We were only able to use two of the five SMA types and the only treatment at the time was brand new. The client also requested a sub-quota of recently-deceased infants. The interviews were deeply personal and addressed mortality from the onset. Moderators trained to be sympathetic but focused frustrated the respondents, so they had to un-learn their training and be as emotionally connected as possible.
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