Cargando…

A global, cross-sectional survey of patient-reported outcomes, disease burden, and quality of life in epidermolysis bullosa simplex

BACKGROUND: Epidermolysis bullosa simplex (EBS) comprises a group of rare, blistering genodermatoses. Prior work has been limited by small sample sizes, and much remains unexplored about the disease burden and health-related quality of life (QOL) of patients with EBS. The aim of this study was to ch...

Descripción completa

Detalles Bibliográficos
Autores principales:	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.
Formato:	Online Artículo Texto
Lenguaje:	English
Publicado:	BioMed Central 2022
Materias:	Research
Acceso en línea:	https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9287948/ https://www.ncbi.nlm.nih.gov/pubmed/35841105 http://dx.doi.org/10.1186/s13023-022-02433-3

Ejemplares similares

Long-term safety and efficacy of gene-corrected autologous keratinocyte grafts for recessive dystrophic epidermolysis bullosa
por: So, Jodi Y., et al.
Publicado: (2022)

A systematic literature review of the disease burden in patients with recessive dystrophic epidermolysis bullosa
por: Tang, Jean Yuh, et al.
Publicado: (2021)

Dystonin modifiers of junctional epidermolysis bullosa and models of epidermolysis bullosa simplex without dystonia musculorum
por: Sproule, Thomas J., et al.
Publicado: (2023)

Managing epidermolysis bullosa during the coronavirus pandemic: Experience and ideals
por: Ramirez-Quizon, Mae, et al.
Publicado: (2021)

A comparison study of outcome measures for epidermolysis bullosa: Epidermolysis Bullosa Disease Activity and Scarring Index (EBDASI) and the Instrument for Scoring Clinical Outcomes of Research for Epidermolysis Bullosa (iscorEB)
por: Rogers, Clare L., et al.
Publicado: (2021)

Prevalence of anemia in patients with epidermolysis bullosa registered in Australia
por: Hwang, Shelley Ji Eun, et al.
Publicado: (2015)

Long-term follow-up of epidermolysis bullosa in real practice shows stability of the Epidermolysis Bullosa Disease Activity and Scarring Index and improvement with some off-label therapies
por: Ho, Genevieve, et al.
Publicado: (2022)

Colchicine may assist in reducing granulation tissue in junctional epidermolysis bullosa
por: Kim, Minhee, et al.
Publicado: (2016)

A Drosophila model of Epidermolysis Bullosa Simplex
por: Bohnekamp, Jens, et al.
Publicado: (2015)

Laryngeal stenosis associated with epidermolysis bullosa simplex
por: Devergne, Cécile, et al.
Publicado: (2020)

Recessive dystrophic epidermolysis bullosa (RDEB) complicated by secondary hepatic amyloidosis
por: Chaptini, Cassandra, et al.
Publicado: (2015)

Assessing the quality of life in the families of patients with epidermolysis bullosa: The mothers as main caregivers
por: Chogani, Fatemeh, et al.
Publicado: (2021)

Oral Manifestations and Dental Management of Epidermolysis Bullosa Simplex
por: Scheidt, Lisa, et al.
Publicado: (2015)

Sporadic form of epidermolysis bullosa simplex with mottled pigmentation()()
por: Ferreira, Flávia Regina, et al.
Publicado: (2020)

Keratins as an Inflammation Trigger Point in Epidermolysis Bullosa Simplex
por: Evtushenko, Nadezhda A., et al.
Publicado: (2021)

Induced Remission of Metastatic Squamous Cell Carcinoma with an Immune Checkpoint Inhibitor in a Patient with Recessive Dystrophic Epidermolysis Bullosa
por: Khaddour, Karam, et al.
Publicado: (2020)

Management of epidermolysis bullosa simplex in pregnancy: A case report
por: Shah, Nidhi, et al.
Publicado: (2019)

Epidermolysis bullosa simplex clearance after nasopharyngeal carcinoma treatment
por: AlKhawajah, Nour Marwan, et al.
Publicado: (2021)

The challenges of living with and managing epidermolysis bullosa: insights from patients and caregivers
por: Bruckner, Anna L., et al.
Publicado: (2020)

A translation re‐initiation variant in KLHL24 also causes epidermolysis bullosa simplex and dilated cardiomyopathy via intermediate filament degradation
por: Vermeer, Mathilde C.S.C., et al.
Publicado: (2022)

Expanding the spectrum of epidermolysis bullosa simplex: Syndromic epidermolysis bullosa simplex with nephropathy and epilepsy secondary to CD151 tetraspanin defect—a case report and review of the literature
por: Dunn, Charles, et al.
Publicado: (2022)

Economic Burden of Epidermolysis Bullosa Disease in Iran
por: Forghani, Siamak Farokh, et al.
Publicado: (2021)

An Inducible Mouse Model for Epidermolysis Bullosa Simplex: Implications for Gene Therapy
por: Cao, Tongyu, et al.
Publicado: (2001)

Downstream effects of plectin mutations in epidermolysis bullosa simplex with muscular dystrophy
por: Winter, Lilli, et al.
Publicado: (2016)

Epidermolysis bullosa simplex with muscular dystrophy associated with PLEC deletion mutation
por: Alvarez, Valeria Carolina, et al.
Publicado: (2016)

Pain and quality of life evaluation in patients with localized epidermolysis bullosa simplex
por: Brun, Jennifer, et al.
Publicado: (2017)

Gastrostomy for infants with severe epidermolysis bullosa simplex in neonatal intensive care
por: Marro, M., et al.
Publicado: (2021)

Cannabinoid use and effects in patients with epidermolysis bullosa: an international cross-sectional survey study
por: Schräder, Nicholas H. B., et al.
Publicado: (2021)

Wound closure in epidermolysis bullosa: data from the vehicle arm of the phase 3 ESSENCE Study
por: Murrell, Dedee F., et al.
Publicado: (2020)

The Epidermolysis Bullosa Disease Activity and Scarring Index (EBDASI): grading disease severity and assessing responsiveness to clinical change in epidermolysis bullosa
por: Jain, S.V., et al.
Publicado: (2016)

Inherited epidermolysis bullosa
por: Fine, Jo-David
Publicado: (2010)

Dystrophic Epidermolysis Bullosa
por: Yadav, Randhir Sagar, et al.
Publicado: (2018)

Epidermolysis bullosa acquisita()
por: Miyamoto, Denise, et al.
Publicado: (2022)

The Use of Cultured Allogenic Keratinocyte Grafting in a Patient with Epidermolysis Bullosa Simplex
por: Shin, Kee Cheol, et al.
Publicado: (2011)

Treatment of symptomatic epidermolysis bullosa simplex with botulinum toxin in a pediatric patient
por: Holahan, Heather M., et al.
Publicado: (2016)

Kaposi varicelliform eruption in a patient with epidermolysis bullosa simplex generalized severe
por: Huguen, Johanna, et al.
Publicado: (2016)

Cardiac transplant for epidermolysis bullosa simplex with KLHL24 mutation–associated cardiomyopathy
por: Grilletta, Erica Ann
Publicado: (2019)

Retrospective evidence on outcomes and experiences of pregnancy and childbirth in epidermolysis bullosa in Australia and New Zealand()()
por: Intong, Lizbeth R.A., et al.
Publicado: (2015)

Retrospective evidence on outcomes and experiences of pregnancy and childbirth in epidermolysis bullosa in Australia and New Zealand()()()
por: Intong, Lizbeth R.A., et al.
Publicado: (2017)

Plectin Missense Mutation p.Leu319Pro in the Pathogenesis of Autosomal Recessive Epidermolysis Bullosa Simplex
por: TU, Wei-Ting, et al.
Publicado: (2020)

Cannot write session to /tmp/vufind_sessions/sess_sdrti6ogutr2kjf1o08mt8a1k4