Topic
Patients with a suprasellar (hypothalamic) brain tumour often have excellent survival, but poor outcome due to hypothalamic dysfunction (HD). The hypothalamus is an endocrine gland and the key-regulator of our body. It not only regulates the anterior pituitary gland, but also regulates core body temperature, circadian rhythm, sodium and energy balance. Patient s with HD experience chronic fatigue, recurrent headaches and inactivity due to hypothalamic imbalances. Patients develop (morbid) obesity, due to excessive hunger (hyperphagia) and low energy expenditure. Emotional dysregulation can be present. There is currently no treatment for HD. Patients and families urge for a solution.
Number of Participants
50 Patients with hypothalamic dysfunction following brain tumour treatment
Study Design
Recruitment of patients will be done in the Princess Máxima Center for paediatric oncology, where all children in the Netherlands with a brain tumour are treated and followed. Children with hypothalamic dysfunction following brain tumour treatment are seen by a multi-disciplinary expert team led by the paediatric endocrinologist. Currently, more than 100 children with hypothalamic dysfunction are known here. Adult participants will also be recruited in the UMCU, at the department of adult endocrinology. The UMCU is a NFU recognized expertise center for Rare Hypothalamic Disease.
Study Centre
Princess Maxima Center, The Netherlands
Start time, Duration
Start: Q3 2023, Study duration: 12 months
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