The Hypothalamic-Pituitary Brain Tumors Patient Registry, established in 2024 by RAWF in collaboration with international experts and stakeholders within the hypothalamic-pituitary brain tumor community, serves as a pivotal resource for comprehensive data collection and analysis. Our mission is to enhance understanding of the natural history, varied characteristics, and associated comorbidities of hypothalamic-pituitary brain tumors, while facilitating clinical trial recruitment, and illuminating the patient and caregiver journey. Additionally, the Registry aims to identify crucial areas for future research and treatment development.

What is the Goal of the Hypothalamic-Pituitary Brain Tumors Patient Registry ?

The goal of the Hypothalamic-Pituitary Brain Tumors Patient Registry is to:

• Support the design of clinical trials that explore new treatments;
• Describe the people who have rare hypothalamic-pituitary brain tumors and to better understand the variability of the diseases between people;
• Understand how rare hypothalamic-pituitary brain tumors changes over a person’s lifetime;
• Learn about clinical practice patterns and variations over the course of treatment;
• Help to develop best practices, management guidelines, and recommendations so that clinicians can know how to give the best care to improve the quality of life and outcomes of people with rare hypothalamic-pituitary brain tumors; and
• Identify people with rare hypothalamic-pituitary brain tumors who might be willing to take part in other research studies or clinical trials. You will be able to choose whether you want to hear about these other studies.

Why Participate?

• Contribute to Research: Your participation directly contributes to advancing knowledge and treatment options for hypothalamic-pituitary brain tumors.
• Impact Patient Outcomes: Help researchers and clinicians better understand the disease, leading to improved outcomes and quality of life for patients.
• Shape Future Therapies: Your insights shape the development of new therapies and interventions, potentially benefiting countless individuals affected by these tumors.
• Global Collaboration: Join a global effort to pool resources and expertise in tackling this rare condition, fostering collaboration among patients, caregivers, researchers, and clinicians.
• Empowerment: By sharing your experiences and insights, you empower yourself and others within the hypothalamic-pituitary brain tumor community to advocate for better care and support.

Joining the Hypothalamic-Pituitary Brain Tumors Patient Registry provides a unique opportunity for patients and caregivers to actively contribute to the advancement of knowledge and treatment options for this rare condition. By sharing your experiences and insights, you become an integral part of a global effort to improve outcomes and quality of life for individuals affected by hypothalamic-pituitary brain tumors. Your participation not only helps researchers and clinicians better understand the disease but also directly impacts the development of new therapies and interventions. Together, we can make a difference in the lives of those living with hypothalamic-pituitary brain tumors. Join us in our mission by registering today.

Who can Participate:

This registry is open to all individuals with rare hypothalamic-pituitary brain tumors. Currently the registry is focusing on individuals diagnosed with craniopharyngioma. We expect to include other rare hypothalamic-pituitary brain tumors in the future.

The registry can be completed by the Legally Authorized Representative/LAR (e.g., a parent, guardian, or spouse) of the person with a hypothalamic-pituitary brain tumor, or by the person diagnosed with a hypothalamic-pituitary brain tumor, if they are able. Please be sure to carefully read the informed consent document before agreeing to participate in the registry. This document contains detailed information on how registry data will be collected, stored, and used. Please read through this information and contact us with any questions. If you are comfortable with all of the terms of the consent document, you can electronically sign it and proceed to answer the registry questions. If you’ve already signed the consent document and set up your account, you can log in directly.

For access to Informed Consent documents, click here and here .

What types of data will be collected in the Hypothalamic-Pituitary Brain Tumors Patient Registry?

The Hypothalamic-Pituitary Brain Tumors Patient Registry collects data on the following topics:

• Socio-demographics
• Medical history and diagnostics
• Treatment and disease progression
• Management of care
• Quality of life
• Health challenges
• Hunger behavior
• Perspectives of patients and their caregivers on their disease and treatments

Is the data secure?

The Hypothalamic-Pituitary Brain Tumors Patient Registry follows strict government guidelines to assure patient information is protected. The platform is served over HTTPS, which means that the data is encrypted when being sent from the user’s browser to the NORD servers. The data is also kept encrypted in the NORD database (data at rest). Communications between the registry platform application server and the database are also encrypted. As with any information one provides electronically, there is a very rare chance that privacy could be compromised. However, the registry and the security measures minimize the chance of this occurring.

Video links:

What is a Registry?

Janet Woodcock, Former Director CDER FDA on NORD Registry Program

Empowering Hope: The Hypothalamic Pituitary Brain Tumor Registry