Advancing Understanding of Hyperphagia in Craniopharyngioma

A newly published study from the Raymond A. Wood Foundation’s Hypothalamic-Pituitary Brain Tumors Patient Registry is helping to deepen understanding of hyperphagia in individuals with craniopharyngioma (CP). The study entitled “Hyperphagia in craniopharyngioma- a real-world study from the international hypothalamic-pituitary brain tumors patient registry” was published in Scientific Reports and co-authored by Scientific Director, Nathalie Kayadjanian, Board Members, Eugenie Hsu, Dean Carson, and Executive Director, Amy Wood.

Using real-world data from the international registry, researchers found that eating behaviors in CP survivors exist along a spectrum—from typical patterns to severe hyperphagia characterized by extreme hunger, lack of satiety and food-seeking, similar to that seen in Prader-Willi syndrome, especially in survivors with hypothalamic obesity (HO).

Importantly, this research is among the first to measure hyperphagia in CP using clinical tools that have been validated in other diseases, enabling a more standardized and quantitative approach to assessing hyperphagia. Findings underscore that hyperphagia extends beyond weight gain, reflecting complex disruptions in appetite regulation that significantly affect daily life and long-term health.

As one of the latest outputs from the patient registry, this study reinforces the critical need for continued patient-centered research, improved clinical recognition, and development of targeted treatments to address hyperphagia and related hypothalamic dysfunction in CP survivors.

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