Cargando…
Awareness and agreement with neurofibromatosis care guidelines among U.S. neurofibromatosis specialists
INTRODUCTION: The neurofibromatoses (NF) are a group of rare, genetic diseases sharing a predisposition to develop multiple benign nervous system tumors. Given the wide range of NF symptoms and medical specialties involved in NF care, we sought to evaluate the level of awareness of, and agreement wi...
Autores principales: | Merker, Vanessa L., Knight, Pamela, Radtke, Heather B., Yohay, Kaleb, Ullrich, Nicole J., Plotkin, Scott R., Jordan, Justin T. |
---|---|
Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
BioMed Central
2022
|
Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8832755/ https://www.ncbi.nlm.nih.gov/pubmed/35144646 http://dx.doi.org/10.1186/s13023-022-02196-x |
Ejemplares similares
-
Increasing access to specialty care for rare diseases: a case study using a foundation sponsored clinic network for patients with neurofibromatosis 1, neurofibromatosis 2, and schwannomatosis
por: Merker, Vanessa L., et al.
Publicado: (2018) -
The impact of the COVID-19 pandemic on neurofibromatosis clinical care and research
por: Radtke, Heather B., et al.
Publicado: (2021) -
The Use of MEK Inhibitors in Neurofibromatosis Type 1–Associated Tumors and Management of Toxicities
por: Klesse, Laura J., et al.
Publicado: (2020) -
COVID-19 in people with neurofibromatosis 1, neurofibromatosis 2, or schwannomatosis
por: Banerjee, Jineta, et al.
Publicado: (2023) -
CLRM-16 PATIENT-FOCUSED DRUG DEVELOPMENT IN NEURO-ONCOLOGY: A PILOT STUDY OF QUALITATIVE PATIENT INTERVIEWS EMBEDDED WITHIN A NEUROFIBROMATOSIS 2 CLINICAL TRIAL
por: Merker, Vanessa, et al.
Publicado: (2022)