So, Jodi Y.
Fulchand, Shivali
Wong, Christine Y.
Li, Shufeng
Nazaroff, Jaron
Gorell, Emily S.
de Souza, Mark P.
Murrell, Dedee F.
Teng, Joyce M.
Chiou, Albert S.
Tang, Jean Y. http://orcid.org/0000-0002-5510-6502
Funding for this research was provided by:
Epidermolysis Bullosa Research Partnership
Dermatology Foundation Medical Career Development Award
Stanford MedScholars Fellowship
Article History
Received: 4 April 2022
Accepted: 30 June 2022
First Online: 15 July 2022
Declarations
:
: This study was considered exempt from review by the Stanford University Institutional Review Board as the data do not contain any identifying information.
: Not applicable.
: The data is sourced from the EBCare registry, which was created by Lotus Tissue Repair, Inc. (now Phoenix Tissue Repair, Inc.), DEBRA of America, and DEBRA International, and is currently managed by Invitae; these organizations were not involved in and did not influence the study design or outcomes of this research. Dr. de Souza is a shareholder in Phoenix Tissue Repair, Inc. and Phoenicis Therapeutics, Inc, and received a salary from Lotus Tissue Repair, Inc. Dr. Murrell is the creator of the Quality of Life in Epidermolysis Bullosa (QOLEB) questionnaire used in this study. Dr. Teng is a consultant to Abeona, Amryt and Castle Creek. Dr. Tang is a stockholder and consultant to BridgeBio and to PellePharm Inc. Drs. Tang, Teng, and Chiou are investigators for an EBS clinical trial sponsored by Biomendics.