A Registry for Patients with Craniopharyngioma and Related Disorders in Childhood and Adolescence

A craniopharyngioma is a rare, benign tumor at the base of the skull that develops from remnants of an embryonic structure called Rathke’s pouch and occurs primarily in children, adolescents, and young adults. Although the tumor is not malignant, its location near important structures such as the optic nerves, the pituitary gland, and the hypothalamus can lead to serious health consequences. These include, among other things, visual disturbances, hormone deficiency, weight gain, and cognitive and psychosocial impairments. Treatment usually requires surgery and, if necessary, radiation therapy, although the choice of treatment can vary greatly from person to person. Craniopharyngiomas usually grow slowly and do not spread to other parts of the body. The prognosis is good, especially if the tumor can be completely removed. However, long-term symptoms such as visual disturbances, hormone deficiency, or neurocognitive impairments may persist. Close follow-up care is therefore very important.

The goal of the 2019 CRANIOPHARYNGIOMA Registry study is to systematically collect long-term data on the treatment, disease course, and follow-up care of patients with craniopharyngioma. The study aims to help improve long-term care, better evaluate the benefits and risks of different therapies, and gain new scientific insights into disease progression and quality of life. To this end, patients will be regularly monitored over a period of at least 3 years to understand how the disease progresses and which treatments are most effective. This is a prospective observational study being conducted by several German centers. The study is observational, which means that no new medications or forms of therapy are being tested.

Patients who were diagnosed with a craniopharyngioma by the age of 18 are eligible to participate. Written consent is required from both the parents or legal guardians and the patient themselves. Building on earlier studies, patients with xanthogranuloma, meningioma, pituitary adenoma, prolactinoma, and cystic intracranial malformations are also being included.