The Cost of Raising Individuals with Fragile X or Chromosome 15 Imprinting Disorders in Australia


Baker, E.K., Arora, S., Amor, D.J., Date, P., Cross, M., O’Brien, J., Simons, C., Rogers, C., Goodall, S., Slee, J., Cahir, C., Godler, D.E.

Scientific Notation:

Journal of Autism and Developmental Disorders.

Publication Link:


The study characterised differences in costs associated with raising a child between four rare disorders and examined the associations between these costs with clinical severity. Caregivers of 108 individuals with Prader-Willi, Angelman (AS), Chromosome 15q Duplication and fragile X (FXS) syndromes completed a modified Client Services Receipt Inventory and participants completed intellectual/developmental functioning and autism assessments. AS incurred the highest yearly costs per individual ($AUD96,994), while FXS had the lowest costs ($AUD33,221). Intellectual functioning negatively predicted total costs, after controlling for diagnosis. The effect of intellectual functioning on total costs for those with AS was
significantly different to the other syndromes. The study highlights the significant costs associated with these syndromes, particularly AS, linked with severity of intellectual functioning.

FPWR Grant:

Newborn Screening for Prader-Willi and Angelman Syndromes