Patient and parent knowledge, understanding, and concerns after a new diagnosis of Ehlers Danlos syndrome
Many respondents actively seek information on the diagnosis and management of EDS. Parents and patients look for information about EDS differently. Parents have more concerns after diagnosis and both want well-constructed, empirically supported educational materials delivered via multiple modalities, which makes clinical guidelines more essential.
Authors
- Jordan T. Jones (ORCID: https://orcid.org/0000-0003-0986-4991)
- William R. Black (ORCID: https://orcid.org/0000-0002-1060-0187)
- Lora L. Black (ORCID: https://orcid.org/0000-0002-3647-4895)
Institutions
- Nationwide Children's Hospital (US)
- Children's Mercy Hospital (US)
- University of Kansas (US)
- Mercy Hospital (US)
- The Ohio State University (US)
- University of Missouri–Kansas City (US)
Publication Details
- Journal
- Orphanet Journal of Rare Diseases
- Published
- 2024-12-30
- DOI
- https://doi.org/10.1186/s13023-024-03517-y
- Primary Topic
- Connective tissue disorders research
- Type
- article
- Field-Weighted Citation Impact
- 0.00
Funders
- Ehlers-Danlos Society
- National Institute of Arthritis and Musculoskeletal and Skin Diseases