Table 1.

Keywords used to search electronic databases

(TI,AB(Rare condition[*1]) OR TI,AB(Rare disease[*1]) OR TI,AB(Orphan disease[*1])) AND (TI,AB(Inherited disease[*1]) OR TI,AB(Genetic disease[*1]) OR TI,AB(Hereditary disease[*1])) AND (TI,AB(Caregiver[*1]) OR TI,AB(Carer[*1])) AND (TI,AB(Experience[*1]) OR TI,AB(Impact[*1]) OR TI,AB(Need[*1]) OR TI,AB(Burden[*1]) OR TI,AB(Support[*1]))