Trial Information

Prospective, Multi-Center Survey Study of Children and Adolescents With Craniopharyngioma

OBJECTIVES:

Primary

- Identify all applied therapy strategies in pediatric patients with craniopharyngioma.

- Correlate relapse status with different therapy strategies/modality in these patients.

- Determine the health status (i.e., ophthalmologic, neuropediatric, and endocrine
findings) and the health-related quality of life of these patients after treatment.

Secondary

- Determine the incidence of craniopharyngioma in pediatric patients.

- Identify quality control measures for diagnosis and therapy in these patients.

- Improve long-term care through a standardized follow-up program in these patients.

- Determine the efficacy of endocrine substitution for postoperative hypopituitarism in
these patients.

- Identify risk factors for developing obesity and correlate the neurotransmitter
concentration of leptin and neuropeptide Y in cerebral spinal fluid, serum, and
craniopharyngioma cystic fluid with the likelihood of developing obesity in these
patients.

- Determine the incidence and extent of eating disorders in these patients.

OUTLINE: This is a multicenter study.

Patients undergo neurologic, endocrine, and ophthalmologic tests and anthropometric
diagnostic measurements. Patients then undergo 1 of the following surgical procedures: total
resection; incomplete, subtotal, or partial resection; biopsy; or cyst pressure release.
Patients whose tumor relapses may undergo a second resection and/or radiotherapy.

Quality of life is assessed at baseline and then periodically thereafter.

After surgery, patients are followed periodically.

PROJECTED ACCRUAL: A total of 120 patients will be accrued for this study.