Introduction and Objective: Adult craniopharyngioma as a rare neoplasm of the central nervous system is still very poorly understood. The clinical implications for affected patients are numerous, ranging from endocrine dysfunction to visual loss and neurological impairment. Although the progress of this tumor entity is slow by nature, affected patients often suffer from multiple symptoms even after successful treatment with a strong impact on their individual quality of life. In order to achieve a better understanding of the course of the illness and the effect of modern treatment options a registry for long-term observation of these patients is introduced by the pituitary workgroup of the DGE.
Material and Methods: Based on the childhood craniopharyngioma registry already in place in Germany, modified case report forms (CRF) were developed to provide a better fit for disease related problems in the adult population. A standardized evaluation of the patients including MRI and CT Scans is performed, where location and dimensions as well as mass effects of the tumor are assessed. Each patient is requested to regularly fill out standardized QoL questionaires. Regular follow ups, beginning 6 months postoperative and after that period according to the endocrinologist/neurosurgeon in charge shall ensure detailed data acquisition.
Results: So far, 10 prospective patients from a single institution have been enrolled since April 2015 (2 male, 8 female, mean age 46 y, range 27 y69 y, mean BMI 24.2, range 17.734.7, 50% (n=3) adamantinous and 50% (n=3) papillary tumors, the remaining tumors were not yet classified.
Conclusion: 7 centers are recruiting, 1 is still awaiting approval by their ethics committee Further participation by other treatment centers is greatly appreciated in order to achieve a better understanding of adult craniopharyngioma and to further optimize our patients treatment and life quality in the future.