Craniopharyngioma Patient And Family Survey

We’re sharing a survey from The Pediatric Pacific Neuro-oncology Consortium (PNOC) and Children’s Brain Tumor Network (CBTN)  who have created a survey to identify the most immediate needs and quality of lift impacts for patients and families to help inform on future craniopharyngioma clinical trials. They plan to close the survey on 5/26/21.

Dear craniopharyngioma survivor families,

The Pediatric Pacific Neuro-oncology Consortium (PNOC) and Children’s Brain Tumor Network (CBTN) are doing a survey to assess overall management of patients with primary and recurrent craniopharyngioma. PNOC and CBTN have brought together disease specific working groups to rapidly translate novel therapies throughout a variety of pediatric central nervous system tumors that demonstrate great need for improved treatments.  Craniopharyngioma is often associated with significant long-term effects, including changes in vision, hormone function, and growth and development. The craniopharyngioma disease specific working group’s aim is to develop clinical trials based on the most up to date biological information to provide better therapy options that results in long-term survivorship with less impact on daily function and quality of life. The purpose of this study is to identify treatments that were offered, factors that played a role in decision making about treatment, tumor and treatment related complications and importance of quality of life and tumor control.  The goal of this survey is to identify the most immediate needs and quality of life impacts for patients and families to help inform on future clinical trial development.  This survey should take no longer than 10-15 minutes to complete, should be completed by someone 18 years or older, and can include adult survivors, adult patients, or adult family members of patients that are minors. The survey is completely anonymous.  If there are any questions or concerns, please do not hesitate to contact us: klinec@chop.edu or fatema.malbari@bcm.edu.