Development of an adult neurofibromatosis clinic in the comprehensive cancer center setting and descriptive analysis of the first 100 patients with neurofibromatosis type 1
A specialized clinic model successfully manages rare genetic cancer syndrome in adults, filling a major gap for patients transitioning from pediatric care.
This descriptive study of the first 100 adult NF1 patients seen at a comprehensive cancer center-based multidisciplinary clinic characterizes the clinical landscape and validates the feasibility of integrated adult NF1 care in an oncology setting. The model addresses a major gap in adult rare disease services, where NF1 patients transitioning from pediatric care often lack appropriate multidisciplinary oncologic surveillance.
What the study was
- Study design
- Descriptive observational cohort (n=100)
- Population
- Adult NF1 patients at Roswell Park Comprehensive Cancer Center; first 100 consecutive patients
- Sample size
- 100
- Category
- Other
- Maturity
- Exploratory
- Journal
- Orphanet Journal of Rare Diseases
Why it surfaced
Rare disease care model for NF1 adults at cancer center; addresses adult transition gap; n=100 descriptive.
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