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MINI REVIEW article

Front. Oncol.

Sec. Pediatric Oncology

Building A Framework for Adolescent and Young Adult Transition of Care for patients with Neurofibromatosis Type 1 and Neurofibromatosis Type 2-related Schwannomatosis Syndromes

Provisionally accepted
Daniel SchwartzbaumDaniel Schwartzbaum1Christine DinhChristine Dinh2,3Nicholas BorjaNicholas Borja4Aditi DhirAditi Dhir1,3Jennifer CotoJennifer Coto3,5Diane JungDiane Jung6Michelle PeiMichelle Pei6Olivia KalmansonOlivia Kalmanson6Bradley GampelBradley Gampel1,3*
  • 1Department of Pediatrics, University of Miami Miller School of Medicine, Miami, United States
  • 2Department of Otolaryngology and Department of Neurological Surgery, University of Miami Miller School of Medicine, Miami, United States
  • 3Sylvester Comprehensive Cancer Center, University of Miami Health System, Miami, United States
  • 4Department of Human Genetics, University of Miami Miller School of Medicine, Miami, United States
  • 5Department of Otolaryngology and Pediatrics, University of Miami Miller School of Medicine, Miami, United States
  • 6Department of Otolaryngology, University of Miami Miller School of Medicine, Miami, United States

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Neurofibromatosis type 1 (NF1) and Neurofibromatosis Type 2-Related Schwannomatosis (NF2-SWN) are the two most common genetic disorders that present with Central nervous system(CNS) tumors. Patients with NF1 and NF2-SWN typically present in childhood and are initially managed by pediatric subspecialties. As CNS tumors are the leading cause of pediatric cancer related death, managing these tumors in NF1 and NF2-SWN patients requires coordinated multidisciplinary life-long care. Adolescent and young adult (AYA) transition of care is a major opportunity for improvement in NF2 and NF2-SWN outcomes. While few small studies have focused on the NF1 population, there is minimal literature covering NF2-SWN AYA transition of care. Healthcare transition (HCT) is extremely complex for all chronic patients; however, these complexities are magnified in patients with NF1 and NF2-SWN. Having an AYA HCT model can decrease gaps in care and improve survival. We review the literature on NF1 and NF2-SWN transition of care and describe the necessary framework to establish a system to improve patient outcomes.

Keywords: adolescent and young adult (AYA) cancer patients, cancer predisposition syndrome, Health care transition, Neurofibramatosis type 2 (NF2), Neurofibramotosis type 1

Received: 23 Dec 2025; Accepted: 21 Jan 2026.

Copyright: © 2026 Schwartzbaum, Dinh, Borja, Dhir, Coto, Jung, Pei, Kalmanson and Gampel. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) or licensor are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.

* Correspondence: Bradley Gampel

Disclaimer: All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article or claim that may be made by its manufacturer is not guaranteed or endorsed by the publisher.

Supplementary Material