The economic impact of caregiving for individuals with Angelman syndrome in the United States: results from a caregiver survey
Caregivers incur substantial costs to accommodate individuals with AS, as well as substantial impacts related to employment and leisure time. This study's findings may be utilized in future research to better estimate the value from therapeutic advances in AS and direct resources toward mitigating economic impacts for households.
Authors
- John Jarvis (ORCID: https://orcid.org/0009-0002-9126-2534)
- Taylor Renteria
- Marric Buessing
- Elizabeth Chertavian (ORCID: https://orcid.org/0009-0008-2707-8955)
- Lauren Hoffer
- Megan Tones (ORCID: https://orcid.org/0000-0003-0482-7489)
- Lufei Tu
- Meagan Cross (ORCID: https://orcid.org/0000-0002-1281-498X)
- R. Fischer
- Amanda Moore
Institutions
- Queensland University of Technology (AU)
- Rome Foundation (US)
- Medication Management (United States) (US)
Publication Details
- Journal
- Orphanet Journal of Rare Diseases
- Published
- 2025-02-21
- DOI
- https://doi.org/10.1186/s13023-025-03551-4
- Citations
- 3
- Primary Topic
- Genetic Syndromes and Imprinting
- Type
- article
- Field-Weighted Citation Impact
- 5.45
Funders
- Angelman Syndrome Foundation
- Foundation for Angelman Syndrome Therapeutics