Research Opportunity: Pituitary Tumour Diagnosis in Childhood

This research study involves the Dutch Pituitary Foundation, the Wilhelmina Children’s Hospital and the Princess Máxima Center in Utrecht, in collaboration with European Reference Network for Rare Endocrine Conditions (Endo-ERN). They are collecting the opinions and experiences of patients (and/or carers) living with the consequences of hypothalamic dysfunction, or problems in the pituitary/hypothalamus area after treatment for a tumour in the hypothalamic/pituitary region.

They would like to know what patients consider important about their condition and which topics they believe should be given priority in healthcare, in research, and on how to function in everyday life.

They are looking for patients who have been diagnosed with or treated for a tumour in the hypothalamic/pituitary region during childhood (diagnosis date, up to 19 years of age), such as a craniopharyngioma, a low grade glioma or a germ cell tumour. This survey is not intended for those who were diagnosed with a tumour in the pituitary region in adulthood. 

Those over 16 can complete the survey with or without a parent/carer. Those between 12 and 16, should complete the survey with a parent and/or carer. For those under 12 the survey should be completed by a parent or carer.

Access the survey here: https://ec.europa.eu/eusurvey/runner/Questionnaireunmetneedcranio2022

For any questions about the survey please contact: rareendoern@lumc.nl