We are pleased to announce that the new AVP-D Survey is now available for participants to complete. This survey has been developed to help researchers better understand the daily experiences, symptoms, and needs of individuals living with Arginine Vasopressin Deficiency (AVP-D). It explores topics such as blood sodium monitoring, treatment experiences, quality of life, and the challenges of managing AVP-D. The information shared by participants is an important part of advancing knowledge, improving care, and supporting future research efforts. Your responses will provide valuable insights into the burden patients and caregivers face every day and help researchers better understand the need for innovations, including accurate at-home sodium monitoring, that could give individuals greater control over their care. If you are an enrolled participant, we encourage you to log in to your registry account and complete the survey at your convenience. ...

A newly published study from the Raymond A. Wood Foundation’s Hypothalamic-Pituitary Brain Tumors Patient Registry is helping to deepen understanding of hyperphagia in individuals with craniopharyngioma (CP). The study entitled “Hyperphagia in craniopharyngioma- a real-world study from the international hypothalamic-pituitary brain tumors patient registry” was published in Scientific Reports and co-authored by Scientific Director, Nathalie Kayadjanian, Board Members, Eugenie Hsu, Dean Carson, and Executive Director, Amy Wood. Using real-world data from the international registry, researchers found that eating behaviors in CP survivors exist along a spectrum—from typical patterns to severe hyperphagia characterized by extreme hunger, lack of satiety and food-seeking, similar to that seen in Prader-Willi syndrome, especially in survivors with hypothalamic obesity (HO). Importantly, this research is among the first to measure hyperphagia in CP using clinical tools that have been validated in other diseases, enabling a more standardized ...

We are pleased to announce the publication of the first study conducted through the Hypothalamic-Pituitary Brain Tumors Patient Registry in Biomedicines. The study entitled “Treatment priorities in Craniopharyngioma: Perspectives of survivors and caregivers” marks an important milestone in advancing patient-centered research in craniopharyngioma (CP). Using real-world data from 161 registry participants, including both adult survivors and caregivers, the study identifies the health challenges that matter most to those living with CP—offering valuable insight into their impacts on daily lives and long-term outcomes, and define priorities that reflect patient needs. Participants identified 17 key health challenges, many related to hypothalamic dysfunction, including sleep-wake cycle, fatigue, obesity, hyperphagia, cognitive difficulties, and emotional regulation. Notably, the challenges considered most important were not always the most common, highlighting the need to better align clinical focus with patient experience. While survivors and caregivers largely agreed ...

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 ...

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 ...