Cutaneous neurofibromas: patients' medical burden, current management and therapeutic expectations: results from an online European patient community survey.

ABSTRACT: BACKGROUND:Neurofibromatosis type 1 is an inherited condition with variable phenotypic expression and a high medical and social burden. The objectives of this patient survey were to better understand the real-world experiences of patients living with cutaneous neurofibromas (cNF), to perceive their satisfaction and feelings about cNF current management (only laser and surgery are currently available), and to highlight their expectations of new therapeutic modalities. RESULTS:One hundred seventy patients from 4 European countries took part in the study, 65% (n = 110) were women and mean age was 39 years old. 96% (n = 164) of respondents have cNF on visible parts of the body and the survey confirmed that total number of cNF and visibility increase with age. Patients reported that cNF mainly

SUBMITTER: Guiraud M 

PROVIDER: S-EPMC6894276 | biostudies-literature | 2019 Dec

REPOSITORIES: biostudies-literature