Shivali started her role as a Postdoctoral Research Fellow at the Stanford University Department of Dermatology in September 2020. She grew up in Leicestershire, England. She graduated from Cardiff University School of Medicine in 2017, and has a BSc (Honours) in Medical Genetics. After graduation, she completed a two-year academic internship program with the University Hospitals of Leicester, England. Following this, she was selected for a national medical leadership fellowship and worked as an Editor at The BMJ from 2019-20. Whilst at medical school, she co-founded The British Student Doctor Journal, a novel peer-reviewed journal to educate and train medical students in editorial work, peer review and publishing. The journal is a publication of The Foundation for Medical Publishing, and Shivali now serves as an Executive Director and Trustee of this organization.
Jean Tang, Postdoctoral Faculty Sponsor
Patient-reported outcomes and quality of life in dominant dystrophic epidermolysis bullosa: A global cross-sectional survey.
INTRODUCTION: Dystrophic epidermolysis bullosa is a debilitating skin condition, without curative treatment. Previous research has focused on the recessive variant, which is known to cause severe disease. Limited work focusing on the clinical manifestations and outcomes of dominant dystrophic epidermolysis bullosa is found (DDEB).METHODS: Analysis of an online survey of 42 DDEB patients.RESULTS: Self-reported severity of disease did not correlate with size of the wound or number of dressing changes, but did correlate with severity of pain reported in the last 12months (3.4 mild vs 6.8 severe disease, P=0.0002). Patients with severe DDEB also reported more severe internal disease symptoms, such as difficulty swallowing (62.5%, P=0.01) and greater analgesic use during dressing changes (4.4% mild vs 81.3% severe, P=<0.001).DISCUSSION: Patient perception of disease severity in DDEB appears to be most impacted by pain, presence of chronic open wounds, difficulty swallowing, difficulty walking, and anal strictures. As research on DDEB increases, future studies focused on these symptoms might be the most impactful for DDEB patients. However, distinguishing DDEB from other subtypes remains a challenge.
View details for DOI 10.1111/pde.14802
View details for PubMedID 34515355