Description
ACH leads to significant multisystem complications across the lifespan, which may affect the HRQoL of individuals and families living with the condition. It is important to understand current experiences within ACH communities in order to improve the quality of care of affected individuals, and to inform clinical practice guidelines. This qualitative study aimed to describe the HRQoL of children and adolescents with ACH and their caregivers.
EU-ACH-00429 04/22
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References:
Shediac R, Moshkovich O, Gerould H, Ballinger R, Williams A, Bellenger MA, Quinn J, Hoover-Fong J, Mohnike K, Savarirayan R, Kelly D Mol Genet Genomic Med 2022; doi:10.1002/mgg3.1891