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Table 1 Phases of Secondary Research

From: Analysis of the caregiver burden associated with Sanfilippo syndrome type B: panel recommendations based on qualitative and quantitative data

Secondary Research Phase Research Dates Method Participants Demographics
Qualitative March and May 2015 60-min telephone interview 26 parents caring for children with Sanfilippo B 9 countries: United States (n = 6), United Kingdom (n = 5), Spain (n = 4), Turkey (n = 4), Japan (n = 3), Argentina (n = 1), Brazil (n = 1), Canada (n = 1), and Portugal (n = 1)
Qualitative April and June 2017 45-min web-enabled telephone interview 5 global clinical experts in Sanfilippo B 5 countries: Australia, Brazil, Spain, Turkey, and the United States (n = 1 for each country)
Quantitative July and August 2017 Online survey 46 Sanfilippo clinicians and patient advocates 12 countries: United States (n = 10), Brazil (n = 9), Colombia (n = 7), Argentina (n = 4), France (n = 3), Turkey (n = 3), Germany (n = 2), Italy (n = 2), Spain (n = 2), United Kingdom (n = 2), Australia (n = 1), and Portugal (n = 1)
Specialties included geneticist/neurogeneticist (n = 17), metabolic specialist (n = 12), pediatric neurologist (n = 6), neurologist (n = 3), pediatrician (n = 3), and other (n = 5)