Table 1 Phases of Secondary Research
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) |