The Hypothalamic-Pituitary Brain Tumors Patient registry collects disease-specific natural history data about individuals with rare hypothalamic-pituitary brain tumors, with the goal of improving the understanding of rare hypothalamic-pituitary brain tumors and informing treatment development. Registry questionnaires were built from common data element standards and may cover the following topics:

• Socio-demographics
• Medical history
• Preoperative diagnosis
• Postoperative diagnosis
• Health Challenges / Comorbidities
• Treatment and disease progression
• Management of care
• Tumor frequency
• Medications
• Hunger behavior
• Hypothalamic obesity

We are interested in sharing our data with you! Third parties may seek access to de-identified data in the Hypothalamic-Pituitary Brain Tumors Patient registry. Third parties may include, but are not limited to, researchers or companies conducting retrospective studies or conducting research and/or clinical trials on new therapies. Third parties will only be granted access to Registry information upon review and approval of the Advisory Board. Such approvals shall be obtained prior to providing access to Registry information; shall be based upon considerations of scientific quality and validity; shall be granted for research studies related to hypothalamic-pituitary brain tumors; and shall be documented. Third parties seeking access to registry information for retrospective studies will only have access to anonymous information identifiable only by the assigned unique identifier. Third parties seeking access to Registry information for the purpose of determining eligibility for participation in a research study or clinical trial must demonstrate evidence of IRB approval of the research study for which access is being requested.

If you would like access to the Hypothalamic-Pituitary Brain Tumors Patient Registry data for a research project, please contact our registry administrator at registry@rawoodfoundation.org for more information. Access to Hypothalamic-Pituitary Brain Tumors Patient Registry data is contingent upon project approval by the Hypothalamic-Pituitary Brain Tumors Patient Registry Advisory Board.

For access to downloads of IRB approved Registry Protocol, click here.

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