RAWF is launching a new registry study to better understand the perspectives of craniopharyngioma survivors and their caregivers on treatment priorities and the impact of the disease on their quality-of-life.

We are pleased to announce the launch of a new RAWF research study on the perspectives of craniopharyngioma survivors and their caregivers on treatment priorities and the impact of the disease on their quality of life.

Many craniopharyngioma survivors experience several health issues that may interfere with their daily activities or their ability to achieve long-term goals as a result of their disease. In this study, we would like to understand how craniopharyngioma survivors have been impacted by those health challenges, which treatments they do or did receive for these issues and how they do or did work, and which health issues they would prioritize for development of new treatments.

Additionally, we have implemented a questionnaire to evaluate the impact of craniopharyngioma on the quality of life of craniopharyngioma survivors.

To enroll into the Hypothalamic-Pituitary Brain Tumors Patient Registry, please visit https://hptumorregistry.iamrare.org.

For those who are already enrolled into the registry, please login: https://app.iamrare.org/Home/Login?stid=116&ReturnUrl=home. Please complete the new surveys entitled “Impact and Treatment Priorities for Health Challenges” and the “Quality of life” survey.

Make your voice heard through your participation in the Hypothalamic Pituitary Brain Tumors Patient Registry! If you have questions or need assistance, contact us at registry@rawoodfoundation.org.