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) 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.
We 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.
We 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 suitable for completing by persons over 16 years of age (with or without a parent/carer) .. For patients who are now between 12 and 16 years of age, we recommend that the questionnaire be completed together with a parent and/or carer. For patients under 12 years of age, the parent or carer completes the survey.
Specifically, this survey is not intended for patients who were diagnosed with a tumour in the hypothalamic/pituitary region condition in adulthood.
To access the survey, please click on this link (or copy it to your browser, préférable Google Chrome):
Deadline: 01 September 2022
The survey starts up in English, but on the right side of page 11 other languages are available (Bulgarian, Danish, Dutch, German, Finnish, French, Italian, Norwegian, Portuguese, Spanish and Swedish). If the survey is started up on a mobile device, please use the selection button (three lines in the light blue box) on the right side to select the appropriate language.
Please let us know if there are any questions; our contact address is mentioned in the survey.
Dr. Hanneke van Santen, pediatric endocrinologist and Johan de Graaf, chair Dutch Pituitary Foundation