Together We Can Advance Research
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 co-morbidities 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.
Why Participate
Contribute to Research
Your participation directly contributes to advancing knowledge and treatment options for hypothalamic-pituitary brain 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
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.
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.
How to Participate
- Follow the link to register on the National Organization for Rare Disorders Registry platform.
- Complete the surveys covering aspects such as diagnosis, medical history, health challenges, medications, nonmedical interventions, hypothalamic obesity, and hunger behavior.
- Keep an eye out for new survey notifications and promptly respond to them.
- Update your information annually to ensure the data remains current and relevant.
How Participation Helps Research
Active participation in the Hypothalamic-Pituitary Brain Tumors Patient Registry significantly contributes to advancing research in this field.
- By sharing your valuable insights and data, you directly contribute to collaborative research endeavors with academic and industry partners.
- Your contributions enable researchers to conduct retrospective studies and clinical trials on new therapies, ultimately leading to improved treatment options and outcomes for individuals affected by hypothalamic-pituitary brain tumors.
- De-identified, aggregated data from the Registry serve as a valuable resource for uncovering insights into disease progression, treatment effectiveness, and identifying areas for further investigation.
- Access to this data is governed by stringent guidelines set forth by the Hypothalamic-Pituitary Brain Tumor Patient Registry Advisory Board, ensuring ethical oversight and data protection.
- Through your participation, you play a crucial role in driving forward research efforts aimed at enhancing our understanding and management of hypothalamic-pituitary brain tumors.
Together, we can make a difference in the lives of those living with hypothalamic-pituitary brain tumors.
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.
Join us in our mission. Register today.
To receive regular updates on Registry data, please email us at registry@rawoodfoundation.org.
Access downloads of IRB approved Hypothalamic-Pituitary Brain Tumors Patient Registry Protocol and Informed Consent documents [LINK].
For more information, contact Nathalie Kayadjanian, Ph.D., Scientific Advisor, or the registry coordinator at registry@rawoodfoundation.org.
Third parties seeking to recruit participants for research studies through the Registry must demonstrate IRB approval of their respective studies. For further inquiries or information, please contact us at registry@rawoodfoundation.org.
