ArticleOrphanet journal of rare diseases2026
Development of an adult neurofibromatosis clinic in the comprehensive cancer center setting and descriptive analysis of the first 100 patients with neurofibromatosis type 1.
Article in Orphanet journal of rare diseases, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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Abstract
backgroundNeurofibromatosis type 1 is a multisystem genetic disorder that most commonly presents with dermatologic manifestations, while also involving the central and peripheral nervous systems. Additional features may include orthopedic, ophthalmologic, and cardiovascular abnormalities, and the condition is further associated with an increased risk of malignancy. Typically, patients receive multidisciplinary care in the setting of a large tertiary-care academic institution within the pediatric department. Here, we describe the development of an adult program housed within a National Cancer Institute-designated comprehensive cancer center and outline our care framework.
methodsWe describe the establishment an adult neurofibromatosis clinic at Roswell Park Comprehensive Cancer Center (Buffalo, NY, USA), including considerations of specialty involvement and expertise, cancer screening and surveillance practices, and clinic workflow. Prospective data were collected and analyzed for the first 100 patients enrolled (2021–2024), including information about their neurofibromatosis-related conditions and cancer history.
resultsNeurofibromatosis-related clinical features in this cohort were consistent with those reported in larger published studies. However, the prevalence of neurofibromatosis type 1-associated malignancy was higher, with 37 diagnoses among 100 patients. This likely reflects the cancer-focused institutional setting of the clinic.
conclusionsMultidisciplinary neurofibromatosis clinics are essential to address the complex needs of adults with neurofibromatosis type 1. Our experience suggests that a comprehensive cancer center provides an optimal setting; it offers relevant clinical expertise and seamless transition from surveillance to active oncology care for patients who develop malignancy, the most common life-threatening complication in the adult population. We present this model to encourage the development of similar programs and to advance adult neurofibromatosis care with the ultimate goal of improving outcomes and quality of life in this patient population.
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