In 2024, the Raymond A. Wood Foundation launched a groundbreaking initiative that’s creating real momentum in rare disease research: the Hypothalamic-Pituitary Brain Tumors Patient Registry. This international registry is a powerful platform for patients, caregivers, to come together, voice their challenges and perspectives, and share data with clinicians, and researchers, to accelerate progress toward better understanding and treating these rare tumors. Since it was created, the Patient Registry has expanded to now include the voices of 397 caregivers and patients. As we continue our mission to grow the patient registry, here are some updates on its history and current progress.
We are thrilled to announce that the registry will be translated in Spanish and French in the coming months. Please stay tuned!
What Is the Hypothalamic-Pituitary Brain Tumors Patient Registry?
The registry is a secure, online database designed to collect detailed survivor and caregiver-reported information about hypothalamic-pituitary brain tumors over several years. These rare tumors affect critical brain structures controlling vital endocrine, vision, intellectual functions, and wide-ranging hypothalamic dysfunctions. It was developed by RAWF in collaboration with global experts and patient community advocates to support research and improve outcomes for people impacted by these conditions. Hosted through the National Organization for Rare Disorders (NORD) on its IAMRARE® platform, the registry serves as a central hub where participants can safely share their medical history, symptoms, treatments, and lived experiences.
Why Your Participation in the Hypothalamic-Pituitary Brain Tumors Patient Registry Matters
Being part of the registry isn’t just about data. It’s about making your voice count in research that matters. Here’s how your participation helps:
- Advance scientific understanding: Shared data helps researchers see patterns in how these tumors, their treatments and related comorbidities develop and progress over time.
- Empower patient communities: The lived experiences you share help shape the research questions and guide therapeutic development that clinicians and scientists pursue next.
- Improve care and outcomes: Insights from real patient experiences help clinicians tailor care strategies and spotlight unmet needs across the patient journey.
- Support clinical studies: Patient entries can support recruitment for new clinical trials and therapeutic studies.
This collective effort means each voice contributes to a bigger picture and gives patients and caregivers a powerful role in driving progress.
Current Progress of the Hypothalamic-Pituitary Brain Tumors Patient Registry
Here is some of the data and updates we’ve collected:
Countries of Residence
The registry is open to patients across the globe. Currently, the participants in the registry are:
- 74% from the USA
- 9% from the UK
- 5% from Canada
- 3% from Australia
- 9% other
Survivor’s Age Distribution
- Survivors range in age from 3 to 76, with the majority falling in the 11-20 age range.
Hypothalamic Obesity Diagnosis
- 54% of survivors have a diagnosis of Hypothalamic Obesity 46% of survivors do not have diagnosis of Hypothalamic Obesity
Gender of survivors
- 59% of survivors are female, and 41% are male
How You Can Help Support the Hypothalamic-Pituitary Brain Tumors Patient Registry
Join the registry if you haven’t already
- Visit the registry through the RAWF website Hypothalamic-Pituitary Brain Tumors Patient Registry
- Complete online surveys about your diagnosis, medical history, health challenges, treatments, and experiences.
If you have already joined the registry
- Watch for new survey prompts and update your data yearly to keep it current. This is important to better understand how the disease changes, and how your perspectives and needs evolve over time
Participation is open to patients and caregivers worldwide who want to make a difference in research and in the broader patient community
Together, We Can Fuel Discovery
The collective data in this registry has real power to deepen our scientific understanding, guide future treatment development, and improve the lives of patients and caregivers. Whether you’re living with a hypothalamic-pituitary tumor or supporting someone who is, your participation can help shape the future of care.
Ready to join or learn more? Head to the registry platform and be part of this global research community.
If you have questions, please free to contact Kirsten Schreuders, Registry Coordinator, at: kirsten@rawoodfoundation.org