ERN GENTURIS tumour surveillance guidelines for individuals with neurofibromatosis type 1.

ABSTRACT:

Background

Neurofibromatosis type 1 (NF1) is a multisystem genetic disorder, predisposing development of benign and malignant tumours. Given the oncogenic potential, long-term surveillance is important in patients with NF1. Proposals for NF1 care and its specific manifestations have been developed, but lack integration within routine care. This guideline aims to assimilate available information on NF1 associated tumours (based on evidence and/or expert opinion) to assist healthcare professionals in undertaking tumour surveillance of NF1 individuals.

Methods

By comprehensive literature review, performed March 18th 2020, guidelines were developed by a NF1 expert group and patient representatives, conversant with clinical care of the wide NF1 disease spectrum. We used a modifie

SUBMITTER: Carton C 

PROVIDER: S-EPMC9845795 | biostudies-literature | 2023 Feb

REPOSITORIES: biostudies-literature