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PROs emerging from focus groups and interviews
Table 1. Sociodemographic characteristics.
Individuals with (G)ID (n = 17)
Adolescents (n = 7)
Cornelia de Lange syndrome 2
Unknown 2
Fragile X syndrome 1
Tuberous sclerosis complex 1
Pitt-Hopkins syndrome 1
SLC6A1 syndrome 1
Wiedemann-Steiner syndrome 1
Rubinstein-Taybi syndrome 1
Intellectual functioning child
Borderline 0
Mild ID2 5
Moderate ID2 4
Severe ID2 2
Profound ID2 1
Clinical experts (n = 22)
HCPs (n = 13)
Frequency
Profession
Psychologist 4
Other paramedic (e.g., dietician) 3
Pediatrician 2
ID physician 2
Nurse 1
European patient representatives (n = 9)
Frequency
Country
Ireland 3
Romania 1
Serbia 1
Italy 1
UK 1
France 1
Belgium 1
ID, intellectual disabilities; (G)ID, genetic intellectual disabilities; HCPs, healthcare professionals.
1None of the individuals with (G)ID identified as a gender other than male or female.
2Based on the classification of the Diagnostic and Statistical Manual of Mental Disorders, Fifth
Edition (DSM-5) (1).
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