Spinal Muscular Atrophy Patients, Caregivers & Treaters

  Just Worldwide      19 May 2021     Fieldwork, Rare Populations, Survey Programming

Spinal Muscular Atrophy case study - our approach and recruitment method

Spinal Muscular Atrophy Patients, Caregivers & Treaters

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.

Methodology: 

  • Physicians – All 60 min WATIs, preferably with video
  • Patients – All 60 min IDIs

Recruitment Method:

  • Physicians via networking and identifying Physicians who are likely to treat the conditions through published materials.
  • There are very few support networks in Latin and South America dealing with SMA.  Referrals from other parents/caregivers were most helpful.
  • Timelines: 6-8 weeks total (including translations and reporting)
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