Early Young Adult Death Underscores the Need for Adolescent and Young Adult Transition Programs in Neurofibromatosis Type 1

Abstract

There are few centers with combined pediatric and adult neurofibromatosis 1 practices and transition of care programming. Using an electronic health records-based approach, we found an early death peak in the fourth decade of life largely owing to malignancy, underscoring the need for integrated neurological training and practice across the lifespan.