Funding for this research was provided by:
Orphan Disease Center, Perelman School of Medicine, University of Pennsylvania (Orphan Disease Center, Perelman School of Medicine, University of Pennsylvania)
K-T Support Group (K-T Support Group)
CLOVES Syndrome Community (CLOVES Syndrome Community)
Article History
Received: 16 December 2022
Accepted: 11 January 2024
First Online: 18 January 2024
Declarations
:
: Ethical approval was given by Washington University School of Medicine Institutional Review Board (IRB approval number 202204173). Participants reviewed an exempt information sheet prior to completing this online survey.
: No personally identifiable data is contained in this article.
: All authors declare that they do not have any competing interests.
: BAS is a pediatric oncology physician specializing in VMs; AK is a medical educator with a PhD in communication. Both authors had led multiple prior qualitative and quantitative studies. SL is a public health research with expertise in systems-level approaches to improving healthcare delivery, and training and experience in biostatistics.