checked in May 2022 NICE No guidance on management. RCPCH No guidance on management.
State..
" diagnostic imaging is often used in the care of patients with NF1 for applications such as tumor surveillance (assessment of burden of tumor and progression). It has been standard practice to use clinical assessment to determine if, when, and where to image. MRI is the most common modality for imaging of plexiform neurofibromas and brain lesions such as OPGs and low-grade gliomas. In addition to MRI, PET-CT may be indicated in the assessment of possible malignant transformation of a neurofibroma. The value of imaging to assess the extent of a plexiform neurofibroma in the absence of evidence of progression is debatable because treatment decisions are typically based on clinical, and not radiographic, progression. Therefore, decisions about whether, when, and where to image are judgments best left to providers experienced in caring for children with NF1."
Footnotes
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David T. Miller, Debra Freedenberg, Elizabeth Schorry, Nicole J. Ullrich, David Viskochil, Bruce R. Korf, COUNCIL ON GENETICS, AMERICAN COLLEGE OF MEDICAL GENETICS AND GENOMICS, Emily Chen, Tracy L. Trotter, Susan A. Berry, Leah W. Burke, Timothy A. Geleske, Rizwan Hamid, Robert J. Hopkin, Wendy J. Introne, Michael J. Lyons, Angela E. Scheuerle, Joan M. Stoler; Health Supervision for Children With Neurofibromatosis Type 1. Pediatrics May 2019; 143 (5): e20190660. 10.1542/peds.2019-0660 ↩