Breathing Dysfunction as a Meaningful and Measurable Aspect of Health in Rett Syndrome: A Caregiver’s Perspective
Caregivers reported that breathing dysfunction was meaningful and measurable and had significant impacts on their child's lives as well as theirs and their families. This study lays the groundwork for guiding the development of novel measures and outcomes within future clinical trials managing breathing dysfunction in Rett syndrome.
Authors
- Kate Lyden (ORCID: https://orcid.org/0000-0002-3343-9007)
- Ieuan Clay (ORCID: https://orcid.org/0000-0001-9722-8834)
- Jana von Hehn (ORCID: https://orcid.org/0000-0002-8756-5543)
- Monica Coenraads
- Jennifer M. Blankenship (ORCID: https://orcid.org/0000-0002-8052-2516)
- Krista S. Leonard-Corzo
- Jessica Li (ORCID: https://orcid.org/0000-0002-3523-7951)
- Robert Wright
- Jennifer C. Richards
Institutions
- Reverse Rett (GB)
- Applied Behavioral Research (United States) (US)
Publication Details
- Journal
- Digital Biomarkers
- Published
- 2025-10-08
- DOI
- https://doi.org/10.1159/000548358
- Primary Topic
- Genetics and Neurodevelopmental Disorders
- Type
- article
- Field-Weighted Citation Impact
- 0.00