In collaboration with the Raymond A. Wood Foundation, Rhythm Pharmaceuticals is launching a new registry study to better understand experiences with fatigue and factors that may affect it, such as weight gain and daytime sleepiness.

Persons diagnosed with craniopharyngioma often experience fatigue and lack of energy in the aftermath of the tumor and/or its treatments. In collaboration with the Raymond A. Wood Foundation, Rhythm Pharmaceuticals is launching a new registry study to better understand experiences with fatigue and factors that may affect it, such as weight gain and daytime sleepiness. The overall goal of the study is to evaluate the burden associated with fatigue and assess approaches for its management.

All persons who have been diagnosed with craniopharyngioma, or their caregivers, are eligible to participate in this registry study.

To participate, please visit www.rawoodfoundation.org/hptumorregistry to enroll into the Hypothalamic-Pituitary Brain Tumors Patient Registry and fill all the surveys.

For those who are already enrolled in the registry, please log into your registry account: https://hptumorregistry.iamrare.org/

Survey participants will receive a $50 Visa electronic gift card upon completion of all surveys by May 18, 2025 as a thank you for their time.

Learning directly from patients and caregivers through their participation in the Hypothalamic Pituitary Brain Tumors Patient Registry is crucially important to support research and improve patient care. If you have questions or need assistance, contact us at registry@rawoodfoundation.org.