Kraniopharyngeom Registry 2019

Childhood-onset craniopharyngioma, xanthogranuloma, cysts of Rathke’s pouch, meningioma, pituitary adenoma, arachnoid cysts

Registry

• Collect epidemiological information
• Collect information on treatment and outcome to determine whether a relationship exists between outcomes and specific interventions
• Collect information on late effects and QoL
• Assess the quality of treatment by the means of data collection, data check and an advisory service provided by the registry and the reference centers
• Establishment of a tumor bank as a base for further biological studies to define new molecular risk factors and to identify new targets for therapy

The registry collects data and gives medical advice. Treatment should be Standard of care.

• Confirmed histological diagnosis of craniopharyngioma, xanthogranuloma cysts of Rathke’s pouch, meningioma, pituitary adenoma or arachnoid cysts in patients ≤18 yrs by reference pathology
• Informed consent by legal guardians and/or patient to contribute data to the registry

Absence of informed consent by legal guardians and/or patient to contribute data to the registry