Raymond A. Wood Foundation and Rhythm Pharmaceuticals Partner to Study Fatigue in Craniopharyngioma Survivors
Fatigue is one of the most challenging and least understood symptoms experienced by survivors of craniopharyngioma and other hypothalamic-pituitary brain tumors. As part of our commitment to improving quality of life for survivors, the Raymond A. Wood Foundation is proud to announce a new research collaboration with Rhythm Pharmaceuticals to study the impact of fatigue in this patient population.
This study will be conducted through our Hypothalamic-Pituitary Brain Tumors Patient Registry, which collects data directly from patients and caregivers to better understand the long-term effects of these rare tumors.
Why This Study Matters
Craniopharyngioma survivors often experience profound fatigue, which can significantly impact their daily lives. Fatigue may be influenced by factors such as weight gain, disrupted sleep patterns, and hypothalamic dysfunction—yet little research has been done to understand its causes and potential treatments.
David Meeker, M.D., Chairman, Chief Executive Officer, and President of Rhythm Pharmaceuticals, emphasized the importance of patient-reported data in advancing care for survivors:
“We are excited to partner with the Raymond A. Wood Foundation on this survey to learn more about fatigue and its effects related to craniopharyngiomas. Learning directly from patients and caregivers is important to advancing our understanding of craniopharyngiomas and fatigue and the consequences for improving care for patients.”
As a patient advocacy organization, we recognize that fatigue is more than just being tired—it’s a life-altering symptom that can affect cognitive function, emotional well-being, and the ability to perform daily activities.
“We are pleased to join Rhythm in this effort to better understand craniopharyngioma survivors’ experiences with fatigue and factors that may affect it, such as weight gain and daytime sleepiness,” stated Amy Wood, Raymond A. Wood Foundation executive director.
Who Can Participate?
All craniopharyngioma survivors or their caregivers are eligible to participate in this study. A $50 Visa gift card will be given to those who complete the surveys.
If you are not yet enrolled in the Hypothalamic-Pituitary Brain Tumors Patient Registry, you can sign up today and complete the survey.
🔗 Join the registry here: www.rawoodfoundation.org/hptumorregistry
If you’re already a part of the registry, log in and complete the survey at:
🔗 https://hptumorregistry.iamrare.org/
For questions related to the study, please contact: registry@rawoodfoundation.org.
Advancing Research for the Craniopharyngioma Community
At the Raymond A. Wood Foundation, we are committed to bridging the gap between patient experiences and scientific research. This collaboration with Rhythm Pharmaceuticals is a critical step in addressing fatigue, one of the most debilitating and overlooked issues faced by craniopharyngioma survivors.
We encourage all patients and caregivers to participate—your voice matters in shaping the future of care and research.
Stay tuned for updates as we move forward with this important study!
