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Chapter 9290tailoring the method of measurement to the individual’s level of functioning. Also, including ID- or proxy-friendly assessment tools will ensure trial compliance.1 This personalized approach has the potential of maximizing treatment and trial adherence that is both evidence-based and patientcentered. Ethical considerations Several ethical considerations exist with regard to interventions for RGNDs. First of all, individuals without a diagnosis (yet) should receive the same expert care that is increasingly available for specific disorders.53 As described in Chapter 8, less than half of individuals with ID received genetic testing as reported in care files, while a genetic etiology can already be identified in up to 50%.54–59 There are also health disparities in access to genetic testing, and some were identified in Chapter 8. These include age, severity of ID, and the legal representative’s relationship to the individual. These sub-groups within RGNDs and ID appeared to be less likely to receive genetic testing. Genetic diagnostics should become accessible and considered for everyone with ID, also for lower-income countries. In the Netherlands, genetic testing is considered an integral part of regular care in children with ID. Due to improved (syndrome-specific) care, life expectancy has increased and the largest population with ID is now adult.60–62 However, many adults with ID have never been genetically tested, possibly missing out on the advantages of disorder-specific care,63,64 even though it is yet unclear whether a known genetic etiology truly reaches the care team with implications for management and multidisciplinary disorder-specific care. Another issue includes access to interventions when effective, but not yet registered for that indication or reimbursement. In a single N-of-1 trial with CBD for a male with Fragile X syndrome, we found substantial improvements on several outcome measures, including GAS. Despite the efforts to substantiate the effectiveness of CBD for this individual and the calculation demonstrating reduced costs in the end, the individual’s healthcare insurance did not want to reimburse on a single basis. Parents faced a dilemma: is it worth to pay a few hundred euros per month for these improvements while it is actually not financially viable in their current situation? These issues should be thoroughly discussed in advance when Annelieke Muller sHL.indd 290 14-11-2023 09:08