ArticleNeurology2021
Imaging Evaluation of Plexiform Neurofibromas in Neurofibromatosis Type 1: A Survey-Based Assessment.
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Article in Neurology, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 11 papers.
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11 citing papers in PubMed, 17 citations in OpenAlex.
- Surgical management of plexiform neurofibromas: An imaging-based perioperative framework.JPRAS open · 2026Review
- Adult-onset multifocal retroperitoneal plexiform neurofibromas: a case report.Journal of medical case reports · 2026Article
- Utility of 18F-FDG PET/CT in the Surveillance of Patients With Neurofibromatosis Type 1.Neurology. Genetics · 2026Article
- Neurofibromatosis type 1-plexiform neurofibromas: Integrating treatment across pediatric and adult populations.Neuro-oncology · 2026Review
- Sacroiliac Joint Involvement: An Underreported Complication of NF1.American journal of medical genetics. Part A · 2026Article
- Contemporary Approach to Neurofibromatosis Type 1-Associated Malignant Peripheral Nerve Sheath Tumors.American Society of Clinical Oncology educational book. American Society of Clinical Oncology. Annual Meeting · 2024Review
- Article
- Article
- Management of neurofibromatosis type 1-associated plexiform neurofibromas.Neuro-oncology · 2022Review
- Neurofibromatosis Clinical Trials-REiNS Collaboration 2020 Recommendations: Looking Back and Moving Ahead.Neurology · 2021Article
- Disease burden and unmet needs in adults with neurofibromatosis type 1 and plexiform neurofibromas: A systematic literature review.Neuro-oncology advancesReview
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Authors and funding
14 authors at 1 institution in 2 countries.
Shivani AhlawatThe Russell H. Morgan Department of Radiology and Radiological Science (S.A., L.M.F.), Johns Hopkins University, Baltimore, MD; Stephen E. and Catherine Pappas Center for Neuro-Oncology (K.I.L., S.R.P.) and Department of Radiology (G.H.), Massachusetts General Hospital, Boston; Division of Oncology (M.J.F.), The Children's Hospital of Philadelphia, PA; Neurofibromatosis Northeast (A.J.L., D.J.B.), Burlington, MA; Department of Neurology (J.M.S.), University Medical Center Hamburg-Eppendorf; Department of Diagnostic and Interventional Radiology and Nuclear Medicine (V.-F.M.), University Hospital Hamburg-Eppendorf, Hamburg, Germany; Mayo Clinic (D.B.-V.), Rochester, MN; Pediatric Oncology Branch (E.D.), National Cancer Institute, Bethesda, MD; and Department of Neurology (J.B.), Johns Hopkins University, Baltimore, MD. sahlawa1@jhmi.edu.ORCID 0000-0003-4437-5237
K Ina LyThe Russell H. Morgan Department of Radiology and Radiological Science (S.A., L.M.F.), Johns Hopkins University, Baltimore, MD; Stephen E. and Catherine Pappas Center for Neuro-Oncology (K.I.L., S.R.P.) and Department of Radiology (G.H.), Massachusetts General Hospital, Boston; Division of Oncology (M.J.F.), The Children's Hospital of Philadelphia, PA; Neurofibromatosis Northeast (A.J.L., D.J.B.), Burlington, MA; Department of Neurology (J.M.S.), University Medical Center Hamburg-Eppendorf; Department of Diagnostic and Interventional Radiology and Nuclear Medicine (V.-F.M.), University Hospital Hamburg-Eppendorf, Hamburg, Germany; Mayo Clinic (D.B.-V.), Rochester, MN; Pediatric Oncology Branch (E.D.), National Cancer Institute, Bethesda, MD; and Department of Neurology (J.B.), Johns Hopkins University, Baltimore, MD.
Laura M FayadThe Russell H. Morgan Department of Radiology and Radiological Science (S.A., L.M.F.), Johns Hopkins University, Baltimore, MD; Stephen E. and Catherine Pappas Center for Neuro-Oncology (K.I.L., S.R.P.) and Department of Radiology (G.H.), Massachusetts General Hospital, Boston; Division of Oncology (M.J.F.), The Children's Hospital of Philadelphia, PA; Neurofibromatosis Northeast (A.J.L., D.J.B.), Burlington, MA; Department of Neurology (J.M.S.), University Medical Center Hamburg-Eppendorf; Department of Diagnostic and Interventional Radiology and Nuclear Medicine (V.-F.M.), University Hospital Hamburg-Eppendorf, Hamburg, Germany; Mayo Clinic (D.B.-V.), Rochester, MN; Pediatric Oncology Branch (E.D.), National Cancer Institute, Bethesda, MD; and Department of Neurology (J.B.), Johns Hopkins University, Baltimore, MD.
Michael J FisherThe Russell H. Morgan Department of Radiology and Radiological Science (S.A., L.M.F.), Johns Hopkins University, Baltimore, MD; Stephen E. and Catherine Pappas Center for Neuro-Oncology (K.I.L., S.R.P.) and Department of Radiology (G.H.), Massachusetts General Hospital, Boston; Division of Oncology (M.J.F.), The Children's Hospital of Philadelphia, PA; Neurofibromatosis Northeast (A.J.L., D.J.B.), Burlington, MA; Department of Neurology (J.M.S.), University Medical Center Hamburg-Eppendorf; Department of Diagnostic and Interventional Radiology and Nuclear Medicine (V.-F.M.), University Hospital Hamburg-Eppendorf, Hamburg, Germany; Mayo Clinic (D.B.-V.), Rochester, MN; Pediatric Oncology Branch (E.D.), National Cancer Institute, Bethesda, MD; and Department of Neurology (J.B.), Johns Hopkins University, Baltimore, MD.
Andrés J LessingThe Russell H. Morgan Department of Radiology and Radiological Science (S.A., L.M.F.), Johns Hopkins University, Baltimore, MD; Stephen E. and Catherine Pappas Center for Neuro-Oncology (K.I.L., S.R.P.) and Department of Radiology (G.H.), Massachusetts General Hospital, Boston; Division of Oncology (M.J.F.), The Children's Hospital of Philadelphia, PA; Neurofibromatosis Northeast (A.J.L., D.J.B.), Burlington, MA; Department of Neurology (J.M.S.), University Medical Center Hamburg-Eppendorf; Department of Diagnostic and Interventional Radiology and Nuclear Medicine (V.-F.M.), University Hospital Hamburg-Eppendorf, Hamburg, Germany; Mayo Clinic (D.B.-V.), Rochester, MN; Pediatric Oncology Branch (E.D.), National Cancer Institute, Bethesda, MD; and Department of Neurology (J.B.), Johns Hopkins University, Baltimore, MD.ORCID 0000-0001-8250-0145
Dale J BergThe Russell H. Morgan Department of Radiology and Radiological Science (S.A., L.M.F.), Johns Hopkins University, Baltimore, MD; Stephen E. and Catherine Pappas Center for Neuro-Oncology (K.I.L., S.R.P.) and Department of Radiology (G.H.), Massachusetts General Hospital, Boston; Division of Oncology (M.J.F.), The Children's Hospital of Philadelphia, PA; Neurofibromatosis Northeast (A.J.L., D.J.B.), Burlington, MA; Department of Neurology (J.M.S.), University Medical Center Hamburg-Eppendorf; Department of Diagnostic and Interventional Radiology and Nuclear Medicine (V.-F.M.), University Hospital Hamburg-Eppendorf, Hamburg, Germany; Mayo Clinic (D.B.-V.), Rochester, MN; Pediatric Oncology Branch (E.D.), National Cancer Institute, Bethesda, MD; and Department of Neurology (J.B.), Johns Hopkins University, Baltimore, MD.
Johannes M SalamonThe Russell H. Morgan Department of Radiology and Radiological Science (S.A., L.M.F.), Johns Hopkins University, Baltimore, MD; Stephen E. and Catherine Pappas Center for Neuro-Oncology (K.I.L., S.R.P.) and Department of Radiology (G.H.), Massachusetts General Hospital, Boston; Division of Oncology (M.J.F.), The Children's Hospital of Philadelphia, PA; Neurofibromatosis Northeast (A.J.L., D.J.B.), Burlington, MA; Department of Neurology (J.M.S.), University Medical Center Hamburg-Eppendorf; Department of Diagnostic and Interventional Radiology and Nuclear Medicine (V.-F.M.), University Hospital Hamburg-Eppendorf, Hamburg, Germany; Mayo Clinic (D.B.-V.), Rochester, MN; Pediatric Oncology Branch (E.D.), National Cancer Institute, Bethesda, MD; and Department of Neurology (J.B.), Johns Hopkins University, Baltimore, MD.
Victor-Felix MautnerThe Russell H. Morgan Department of Radiology and Radiological Science (S.A., L.M.F.), Johns Hopkins University, Baltimore, MD; Stephen E. and Catherine Pappas Center for Neuro-Oncology (K.I.L., S.R.P.) and Department of Radiology (G.H.), Massachusetts General Hospital, Boston; Division of Oncology (M.J.F.), The Children's Hospital of Philadelphia, PA; Neurofibromatosis Northeast (A.J.L., D.J.B.), Burlington, MA; Department of Neurology (J.M.S.), University Medical Center Hamburg-Eppendorf; Department of Diagnostic and Interventional Radiology and Nuclear Medicine (V.-F.M.), University Hospital Hamburg-Eppendorf, Hamburg, Germany; Mayo Clinic (D.B.-V.), Rochester, MN; Pediatric Oncology Branch (E.D.), National Cancer Institute, Bethesda, MD; and Department of Neurology (J.B.), Johns Hopkins University, Baltimore, MD.
Dusica Babovic-VuksanovicThe Russell H. Morgan Department of Radiology and Radiological Science (S.A., L.M.F.), Johns Hopkins University, Baltimore, MD; Stephen E. and Catherine Pappas Center for Neuro-Oncology (K.I.L., S.R.P.) and Department of Radiology (G.H.), Massachusetts General Hospital, Boston; Division of Oncology (M.J.F.), The Children's Hospital of Philadelphia, PA; Neurofibromatosis Northeast (A.J.L., D.J.B.), Burlington, MA; Department of Neurology (J.M.S.), University Medical Center Hamburg-Eppendorf; Department of Diagnostic and Interventional Radiology and Nuclear Medicine (V.-F.M.), University Hospital Hamburg-Eppendorf, Hamburg, Germany; Mayo Clinic (D.B.-V.), Rochester, MN; Pediatric Oncology Branch (E.D.), National Cancer Institute, Bethesda, MD; and Department of Neurology (J.B.), Johns Hopkins University, Baltimore, MD.
Eva DombiThe Russell H. Morgan Department of Radiology and Radiological Science (S.A., L.M.F.), Johns Hopkins University, Baltimore, MD; Stephen E. and Catherine Pappas Center for Neuro-Oncology (K.I.L., S.R.P.) and Department of Radiology (G.H.), Massachusetts General Hospital, Boston; Division of Oncology (M.J.F.), The Children's Hospital of Philadelphia, PA; Neurofibromatosis Northeast (A.J.L., D.J.B.), Burlington, MA; Department of Neurology (J.M.S.), University Medical Center Hamburg-Eppendorf; Department of Diagnostic and Interventional Radiology and Nuclear Medicine (V.-F.M.), University Hospital Hamburg-Eppendorf, Hamburg, Germany; Mayo Clinic (D.B.-V.), Rochester, MN; Pediatric Oncology Branch (E.D.), National Cancer Institute, Bethesda, MD; and Department of Neurology (J.B.), Johns Hopkins University, Baltimore, MD.ORCID 0000-0002-5323-6995
Gordon HarrisThe Russell H. Morgan Department of Radiology and Radiological Science (S.A., L.M.F.), Johns Hopkins University, Baltimore, MD; Stephen E. and Catherine Pappas Center for Neuro-Oncology (K.I.L., S.R.P.) and Department of Radiology (G.H.), Massachusetts General Hospital, Boston; Division of Oncology (M.J.F.), The Children's Hospital of Philadelphia, PA; Neurofibromatosis Northeast (A.J.L., D.J.B.), Burlington, MA; Department of Neurology (J.M.S.), University Medical Center Hamburg-Eppendorf; Department of Diagnostic and Interventional Radiology and Nuclear Medicine (V.-F.M.), University Hospital Hamburg-Eppendorf, Hamburg, Germany; Mayo Clinic (D.B.-V.), Rochester, MN; Pediatric Oncology Branch (E.D.), National Cancer Institute, Bethesda, MD; and Department of Neurology (J.B.), Johns Hopkins University, Baltimore, MD.
Scott R PlotkinThe Russell H. Morgan Department of Radiology and Radiological Science (S.A., L.M.F.), Johns Hopkins University, Baltimore, MD; Stephen E. and Catherine Pappas Center for Neuro-Oncology (K.I.L., S.R.P.) and Department of Radiology (G.H.), Massachusetts General Hospital, Boston; Division of Oncology (M.J.F.), The Children's Hospital of Philadelphia, PA; Neurofibromatosis Northeast (A.J.L., D.J.B.), Burlington, MA; Department of Neurology (J.M.S.), University Medical Center Hamburg-Eppendorf; Department of Diagnostic and Interventional Radiology and Nuclear Medicine (V.-F.M.), University Hospital Hamburg-Eppendorf, Hamburg, Germany; Mayo Clinic (D.B.-V.), Rochester, MN; Pediatric Oncology Branch (E.D.), National Cancer Institute, Bethesda, MD; and Department of Neurology (J.B.), Johns Hopkins University, Baltimore, MD.ORCID 0000-0002-6109-6419
Jaishri BlakeleyThe Russell H. Morgan Department of Radiology and Radiological Science (S.A., L.M.F.), Johns Hopkins University, Baltimore, MD; Stephen E. and Catherine Pappas Center for Neuro-Oncology (K.I.L., S.R.P.) and Department of Radiology (G.H.), Massachusetts General Hospital, Boston; Division of Oncology (M.J.F.), The Children's Hospital of Philadelphia, PA; Neurofibromatosis Northeast (A.J.L., D.J.B.), Burlington, MA; Department of Neurology (J.M.S.), University Medical Center Hamburg-Eppendorf; Department of Diagnostic and Interventional Radiology and Nuclear Medicine (V.-F.M.), University Hospital Hamburg-Eppendorf, Hamburg, Germany; Mayo Clinic (D.B.-V.), Rochester, MN; Pediatric Oncology Branch (E.D.), National Cancer Institute, Bethesda, MD; and Department of Neurology (J.B.), Johns Hopkins University, Baltimore, MD.
REiNS International Collaboration
Universität Hamburg · DE
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectiveTo assess imaging utilization practices across clinical specialists in neurofibromatosis type 1 (NF1) for the evaluation of symptomatic and asymptomatic children and adults with or without plexiform neurofibromas (PN).
methodsAn institutional review board-exempt survey was administered to medical practitioners caring for individuals with NF1 at the Response Evaluation in Neurofibromatosis and Schwannomatosis (REiNS) meeting in September 2019. The survey included questions on respondent demographic data (9 questions), type of imaging obtained for asymptomatic (4 questions) and symptomatic (4 questions) people with and without PN, and utilization of diffusion-weighted imaging (2 questions).
resultsThirty practitioners participated in the survey. Most were academic neuro-oncologists at high-volume (>10 patients/week) NF1 centers. Of 30 respondents, 26 had access to whole-body MRI (WB-MRI). The most common approach to an asymptomatic person without PN was no imaging (adults: 57% [17/30]; children: 50% [15/30]), followed by a screening WB-MRI (adults: 20% [6/30]; children: 26.7% [8/30]). The most common approach to a person with symptoms or known PN was regional MRI (adults: 90% [27/30]; children: 93% [28/30]), followed by WB-MRI (adults: 20% [6/30]; children: 36.7% [11/30]). WB-MRI was most often obtained to evaluate a symptomatic child with PN (37% [11/30]).
conclusionsMore than 90% of practitioners indicated they would obtain a regional MRI in a symptomatic patient without known or visible PN. Otherwise, there was little consensus on imaging practices. Given the high prevalence of PN and risk of malignant conversion in this patient population, there is a need to define imaging-based guidelines for optimal clinical care and the design of future clinical trials.
Indexed as
AdolescentAdultChildHumansMagnetic Resonance ImagingMaleMiddle AgedNeurilemmomaNeurofibroma, PlexiformNeurofibromatosesNeurofibromatosis 1Skin NeoplasmsSurveys and QuestionnairesYoung Adult
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