{"id":9131,"date":"2024-04-02T14:35:10","date_gmt":"2024-04-02T14:35:10","guid":{"rendered":"https:\/\/www.rawoodfoundation.org\/?page_id=9131"},"modified":"2025-12-23T05:09:17","modified_gmt":"2025-12-23T05:09:17","slug":"registre-des-tumeurs","status":"publish","type":"page","link":"https:\/\/www.rawoodfoundation.org\/fr\/hptumorregistry\/","title":{"rendered":"Registre des patients atteints de tumeurs c\u00e9r\u00e9brales hypothalamo-hypophysaires"},"content":{"rendered":"\n<h2 class=\"wp-block-heading\">Together We Can Advance Research<\/h2>\n\n\n\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-9d6595d7 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\">\n<p>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.<\/p>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\">\n<figure class=\"wp-block-embed is-type-video is-provider-youtube wp-block-embed-youtube wp-embed-aspect-16-9 wp-has-aspect-ratio\"><div class=\"wp-block-embed__wrapper\">\n<iframe title=\"Empowering Hope: The Hypothalamic Pituitary Brain Tumor Registry\" width=\"1200\" height=\"675\" src=\"https:\/\/www.youtube.com\/embed\/WOamHZhewJk?feature=oembed&#038;enablejsapi=1&#038;origin=https:\/\/www.rawoodfoundation.org\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe>\n<\/div><figcaption class=\"wp-element-caption\">Watch our video explaining the patient registry.<\/figcaption><\/figure>\n<\/div>\n<\/div>\n\n\n\n<a class=\"gb-button gb-button-b0517c7b gb-button-text\" href=\"https:\/\/hptumorregistry.iamrare.org\/\" target=\"_blank\" rel=\"noopener noreferrer\">Register Now<\/a>\n\n\n<div class=\"gb-container gb-container-8927be78 alignfull\">\n<div class=\"gb-container gb-container-e8faa447\">\n<div class=\"gb-container gb-container-c5d48590\">\n\n<h2 class=\"wp-block-heading\">Why Participate<\/h2>\n\n\n<div class=\"gb-grid-wrapper gb-grid-wrapper-2d348ef2\">\n<div class=\"gb-grid-column gb-grid-column-5f108342\"><div class=\"gb-container gb-container-5f108342\">\n\n<h3 class=\"wp-block-heading\"><strong><strong>Contribute to Research<\/strong><\/strong><\/h3>\n\n\n\n<p>Your participation directly contributes to advancing knowledge and treatment options for hypothalamic-pituitary brain tumors.<\/p>\n\n<\/div><\/div>\n\n<div class=\"gb-grid-column gb-grid-column-74311f7f\"><div class=\"gb-container gb-container-74311f7f\">\n\n<h3 class=\"wp-block-heading\"><strong><strong>Global Collaboration<\/strong><\/strong><\/h3>\n\n\n\n<p>Join a global effort to pool resources and expertise in tackling this rare condition, fostering collaboration among patients, caregivers, researchers, and clinicians<\/p>\n\n<\/div><\/div>\n<\/div>\n\n<div class=\"gb-grid-wrapper gb-grid-wrapper-a1d7cdd1\">\n<div class=\"gb-grid-column gb-grid-column-797e8cdf\"><div class=\"gb-container gb-container-797e8cdf\">\n\n<h3 class=\"wp-block-heading\"><strong><strong><strong><strong>Impact Patient Outcomes<\/strong><\/strong><\/strong><\/strong><\/h3>\n\n\n\n<p>Help researchers and clinicians better understand the disease, leading to improved outcomes and quality of life for patients.<\/p>\n\n\n\n<h3 class=\"wp-block-heading\"><strong>Shape Future Therapies<\/strong><\/h3>\n\n\n\n<p>Your insights shape the development of new therapies and interventions, potentially benefiting countless individuals affected by these tumors.<\/p>\n\n<\/div><\/div>\n\n<div class=\"gb-grid-column gb-grid-column-09ca9f52\"><div class=\"gb-container gb-container-09ca9f52\">\n\n<h3 class=\"wp-block-heading\"><strong><strong><strong><strong>Empowerment<\/strong><\/strong><\/strong><\/strong><\/h3>\n\n\n\n<p>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.<\/p>\n\n<\/div><\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n\n\n<div style=\"height:27px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<h2 class=\"wp-block-heading\"><strong>How to Participate<\/strong><\/h2>\n\n\n\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-9d6595d7 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:66.66%\">\n<ol class=\"wp-block-list\">\n<li>Follow the link to register on the National Organization for Rare Disorders Registry platform.<\/li>\n\n\n\n<li>Complete the surveys covering aspects such as diagnosis, medical history, health challenges, medications, nonmedical interventions, hypothalamic obesity, and hunger behavior.<\/li>\n\n\n\n<li>Keep an eye out for new survey notifications and promptly respond to them.<\/li>\n\n\n\n<li>Update your information annually to ensure the data remains current and relevant.<\/li>\n<\/ol>\n\n\n\n<h2 class=\"wp-block-heading\"><strong>How Participation Helps Research<\/strong><\/h2>\n\n\n\n<p>Active participation in the Hypothalamic-Pituitary Brain Tumors Patient Registry significantly contributes to advancing research in this field. <\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>By sharing your valuable insights and data, you directly contribute to collaborative research endeavors with academic and industry partners. <\/li>\n\n\n\n<li>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. <\/li>\n\n\n\n<li>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. <\/li>\n\n\n\n<li>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. <\/li>\n\n\n\n<li>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.<\/li>\n<\/ul>\n\n\n\n<a class=\"gb-button gb-button-4d82ea38 gb-button-text\" href=\"https:\/\/hptumorregistry.iamrare.org\/\" target=\"_blank\" rel=\"noopener noreferrer\">Register Now<\/a>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:33.33%\">\n<figure class=\"wp-block-image size-full\"><img decoding=\"async\" width=\"500\" height=\"1000\" src=\"https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2024\/04\/How-to-Participate.png\" alt=\"Graphic of how to participate.\" class=\"wp-image-9196\" srcset=\"https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2024\/04\/How-to-Participate.png 500w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2024\/04\/How-to-Participate-150x300.png 150w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2024\/04\/How-to-Participate-6x12.png 6w\" sizes=\"(max-width: 500px) 100vw, 500px\" \/><\/figure>\n<\/div>\n<\/div>\n\n\n\n<div style=\"height:24px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<h2 class=\"wp-block-heading\">Data Privacy FAQs<\/h2>\n\n\n\n<figure class=\"wp-block-embed is-type-video is-provider-youtube wp-block-embed-youtube wp-embed-aspect-16-9 wp-has-aspect-ratio\"><div class=\"wp-block-embed__wrapper\">\n<iframe title=\"Ensuring Data Security in the Hypothalamic-Pituitary Brain Tumors Patient Registry\" width=\"1200\" height=\"675\" src=\"https:\/\/www.youtube.com\/embed\/muwXWbRPiaU?feature=oembed&#038;enablejsapi=1&#038;origin=https:\/\/www.rawoodfoundation.org\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe>\n<\/div><\/figure>\n\n\n<div class=\"gb-container gb-container-abc4b512 gb-accordion\">\n<div class=\"gb-container gb-container-04bac3e3 gb-accordion__item\" data-transition=\"slide\">\n\n<button class=\"gb-button gb-button-1f6d4cb1 gb-accordion__toggle\"><span class=\"gb-button-text\"><strong>Is the data secure?&nbsp;<\/strong><\/span><span class=\"gb-icon\"><svg xmlns=\"http:\/\/www.w3.org\/2000\/svg\" viewBox=\"0 0 448 512\" width=\"1em\" height=\"1em\" ariahidden=\"true\" role=\"img\" class=\"gb-accordion__icon\"><path d=\"M207.029 381.476L12.686 187.132c-9.373-9.373-9.373-24.569 0-33.941l22.667-22.667c9.357-9.357 24.522-9.375 33.901-.04L224 284.505l154.745-154.021c9.379-9.335 24.544-9.317 33.901.04l22.667 22.667c9.373 9.373 9.373 24.569 0 33.941L240.971 381.476c-9.373 9.372-24.569 9.372-33.942 0z\" fill=\"currentColor\"><\/path><\/svg><svg xmlns=\"http:\/\/www.w3.org\/2000\/svg\" viewBox=\"0 0 448 512\" width=\"1em\" height=\"1em\" ariahidden=\"true\" role=\"img\" class=\"gb-accordion__icon-open\"><path d=\"M240.971 130.524l194.343 194.343c9.373 9.373 9.373 24.569 0 33.941l-22.667 22.667c-9.357 9.357-24.522 9.375-33.901.04L224 227.495 69.255 381.516c-9.379 9.335-24.544 9.317-33.901-.04l-22.667-22.667c-9.373-9.373-9.373-24.569 0-33.941L207.03 130.525c9.372-9.373 24.568-9.373 33.941-.001z\" fill=\"currentColor\"><\/path><\/svg><\/span><\/button>\n\n\n<div class=\"gb-accordion__content\"><div class=\"gb-container gb-container-ef205711\">\n\n<p>The Hypothalamic-Pituitary Brain Tumors Patient Registry is a secure platform hosted on the National Organization for Rare Disorders (NORD) platform. It follows strict government guidelines to assure patient information is protected. The platform is compliant with:&nbsp;<\/p>\n\n\n\n<p>\u2022 US Health Information Privacy Laws (HIPPA, HITECH, and FISMA)&nbsp;<\/p>\n\n\n\n<p>\u2022 State privacy laws (where applicable)&nbsp;<\/p>\n\n\n\n<p>\u2022 FDA regulations on electronic records (21CFR Part 11)&nbsp;<\/p>\n\n\n\n<p>\u2022 European Union Data Directive and General Data Protection Regulation&nbsp;<\/p>\n\n\n\n<p><em>NORD launched its first patient registry in 2014 and is currently hosting over 60 registries. Since its inception, there has never been a data breach or an incident where participant data security was compromised to date.&nbsp;<\/em><\/p>\n\n\n\n<p>The Hypothalamic-Pituitary Brain Tumors Patient Registry protocol and procedures have been reviewed and approved by an Institutional Regulatory Board (IRB) (North Star Review Board), which has ensured that human subject research is conducted in accordance with all federal, institutional, and ethical guidelines.&nbsp;<\/p>\n\n\n\n<p>The platform is served over HTTPS, which means that the data is encrypted when being sent from the user\u2019s 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.&nbsp;<\/p>\n\n\n\n<p>Further, the information participants provide is de-identified, which means that all Personal Health Identification (PHI) has been removed, and then aggregated (combined and summarized) with data from other registry participants. The registry usually shares only de-identified data with the research community conducting research studies or clinical trials, companies developing potential drugs or other treatments for hypothalamic-pituitary brain tumors, or other parties. In some cases that will be reviewed by the registry advisory board, data containing PHI will be shared if the research cannot be done without it. All data sharing is in accordance with the data access and sharing guidelines outlined in the IRB-approved registry protocol. Any information that identifies participants is removed. The only people with direct access to the registry data are the investigators on the registry protocol.&nbsp;<\/p>\n\n<\/div><\/div>\n<\/div>\n<\/div>\n\n<div class=\"gb-container gb-container-caa3b033 gb-accordion\">\n<div class=\"gb-container gb-container-caca2394 gb-accordion__item\" data-transition=\"slide\">\n\n<button class=\"gb-button gb-button-f21c2c1a gb-accordion__toggle\"><span class=\"gb-button-text\"><strong>What is Personal Health Information (PHI)?&nbsp;<\/strong><\/span><span class=\"gb-icon\"><svg xmlns=\"http:\/\/www.w3.org\/2000\/svg\" viewBox=\"0 0 448 512\" width=\"1em\" height=\"1em\" ariahidden=\"true\" role=\"img\" class=\"gb-accordion__icon\"><path d=\"M207.029 381.476L12.686 187.132c-9.373-9.373-9.373-24.569 0-33.941l22.667-22.667c9.357-9.357 24.522-9.375 33.901-.04L224 284.505l154.745-154.021c9.379-9.335 24.544-9.317 33.901.04l22.667 22.667c9.373 9.373 9.373 24.569 0 33.941L240.971 381.476c-9.373 9.372-24.569 9.372-33.942 0z\" fill=\"currentColor\"><\/path><\/svg><svg xmlns=\"http:\/\/www.w3.org\/2000\/svg\" viewBox=\"0 0 448 512\" width=\"1em\" height=\"1em\" ariahidden=\"true\" role=\"img\" class=\"gb-accordion__icon-open\"><path d=\"M240.971 130.524l194.343 194.343c9.373 9.373 9.373 24.569 0 33.941l-22.667 22.667c-9.357 9.357-24.522 9.375-33.901.04L224 227.495 69.255 381.516c-9.379 9.335-24.544 9.317-33.901-.04l-22.667-22.667c-9.373-9.373-9.373-24.569 0-33.941L207.03 130.525c9.372-9.373 24.568-9.373 33.941-.001z\" fill=\"currentColor\"><\/path><\/svg><\/span><\/button>\n\n\n<div class=\"gb-accordion__content\"><div class=\"gb-container gb-container-21f18da5\">\n\n<p>The Health Insurance Portability and Accountability Act (HIPAA) of 1996 is the primary law that oversees the use of, access to and disclosure of Protected health information (PHI), also referred to as personal health information, in the United States.&nbsp;<\/p>\n\n\n\n<p>HIPAA defines PHI as data that relates to the past, present or future health of an individual; the provision of healthcare to an individual; or the payment for the provision of healthcare to an individual. HIPAA regulates how this data is created, collected, transmitted, maintained and stored by any HIPAA-covered organization.&nbsp;<\/p>\n\n\n\n<p>HIPAA lists different information identifiers that, when paired with health information, become PHI. Some of these identifiers on their own can allow an individual to be identified, contacted or located. Others must be combined with other information to identify a person. The registry uses a number of PHI that includes the following (list non exhaustive):&nbsp;<\/p>\n\n\n\n<p>1. First and last name;&nbsp;<\/p>\n\n\n\n<p>2. Date of Birth (DOB)<\/p>\n\n\n\n<p>3. Sex recorded on birth certificate<\/p>\n\n\n\n<p>4. City\/Municipality of Birth<\/p>\n\n\n\n<p>5. State\/Province of residence<\/p>\n\n\n\n<p>6. Email address<\/p>\n\n\n\n<p>7. Diagnoses<\/p>\n\n<\/div><\/div>\n<\/div>\n<\/div>\n\n<div class=\"gb-container gb-container-6216e209 gb-accordion\">\n<div class=\"gb-container gb-container-642bad45 gb-accordion__item\" data-transition=\"slide\">\n\n<button class=\"gb-button gb-button-9f2e90e7 gb-accordion__toggle\"><span class=\"gb-button-text\"><strong>Why it is important to enter correct personal information?&nbsp;<\/strong><\/span><span class=\"gb-icon\"><svg xmlns=\"http:\/\/www.w3.org\/2000\/svg\" viewBox=\"0 0 448 512\" width=\"1em\" height=\"1em\" ariahidden=\"true\" role=\"img\" class=\"gb-accordion__icon\"><path d=\"M207.029 381.476L12.686 187.132c-9.373-9.373-9.373-24.569 0-33.941l22.667-22.667c9.357-9.357 24.522-9.375 33.901-.04L224 284.505l154.745-154.021c9.379-9.335 24.544-9.317 33.901.04l22.667 22.667c9.373 9.373 9.373 24.569 0 33.941L240.971 381.476c-9.373 9.372-24.569 9.372-33.942 0z\" fill=\"currentColor\"><\/path><\/svg><svg xmlns=\"http:\/\/www.w3.org\/2000\/svg\" viewBox=\"0 0 448 512\" width=\"1em\" height=\"1em\" ariahidden=\"true\" role=\"img\" class=\"gb-accordion__icon-open\"><path d=\"M240.971 130.524l194.343 194.343c9.373 9.373 9.373 24.569 0 33.941l-22.667 22.667c-9.357 9.357-24.522 9.375-33.901.04L224 227.495 69.255 381.516c-9.379 9.335-24.544 9.317-33.901-.04l-22.667-22.667c-9.373-9.373-9.373-24.569 0-33.941L207.03 130.525c9.372-9.373 24.568-9.373 33.941-.001z\" fill=\"currentColor\"><\/path><\/svg><\/span><\/button>\n\n\n<div class=\"gb-accordion__content\"><div class=\"gb-container gb-container-b6f5b169\">\n\n<p>Although there is a very rare chance that privacy could be compromised, it is important to enter accurate information. The <strong>consent form <\/strong>that you must read and sign to participate in the study is a legal document, and it must be signed with your real name for it to be valid. Also, for research purposes, it is very important that the data contained in the registry is trustworthy so that the voice of patients and caregivers is credible and can be heard by the community of healthcare providers, scientists, regulatory agencies. Additionally, entering incorrect information such as DOB will jeopardize the creation of an identification number such as CRID or GUID that can be used to link your medical information across different databases without sharing personal health information.&nbsp;<\/p>\n\n<\/div><\/div>\n<\/div>\n<\/div>\n\n<div class=\"gb-container gb-container-8b31b316 gb-accordion\">\n<div class=\"gb-container gb-container-47a37313 gb-accordion__item\" data-transition=\"slide\">\n\n<button class=\"gb-button gb-button-6dcd48fb gb-accordion__toggle\"><span class=\"gb-button-text\"><strong>Where is the data stored?&nbsp;<\/strong><\/span><span class=\"gb-icon\"><svg xmlns=\"http:\/\/www.w3.org\/2000\/svg\" viewBox=\"0 0 448 512\" width=\"1em\" height=\"1em\" ariahidden=\"true\" role=\"img\" class=\"gb-accordion__icon\"><path d=\"M207.029 381.476L12.686 187.132c-9.373-9.373-9.373-24.569 0-33.941l22.667-22.667c9.357-9.357 24.522-9.375 33.901-.04L224 284.505l154.745-154.021c9.379-9.335 24.544-9.317 33.901.04l22.667 22.667c9.373 9.373 9.373 24.569 0 33.941L240.971 381.476c-9.373 9.372-24.569 9.372-33.942 0z\" fill=\"currentColor\"><\/path><\/svg><svg xmlns=\"http:\/\/www.w3.org\/2000\/svg\" viewBox=\"0 0 448 512\" width=\"1em\" height=\"1em\" ariahidden=\"true\" role=\"img\" class=\"gb-accordion__icon-open\"><path d=\"M240.971 130.524l194.343 194.343c9.373 9.373 9.373 24.569 0 33.941l-22.667 22.667c-9.357 9.357-24.522 9.375-33.901.04L224 227.495 69.255 381.516c-9.379 9.335-24.544 9.317-33.901-.04l-22.667-22.667c-9.373-9.373-9.373-24.569 0-33.941L207.03 130.525c9.372-9.373 24.568-9.373 33.941-.001z\" fill=\"currentColor\"><\/path><\/svg><\/span><\/button>\n\n\n<div class=\"gb-accordion__content\"><div class=\"gb-container gb-container-25bf42ff\">\n\n<p>NORD stores Sponsor and Participant Registry Data on NORD encrypted servers and\/or encrypted servers of third-party vendors hosted in Canada. Regular back-up at commercially acceptable intervals is provided. These servers meet industry standards and are compliant with US and international regulations, including GDPR.&nbsp;<\/p>\n\n<\/div><\/div>\n<\/div>\n<\/div>\n\n<div class=\"gb-container gb-container-55ac67f7 gb-accordion\">\n<div class=\"gb-container gb-container-64a4a863 gb-accordion__item\" data-transition=\"slide\">\n\n<button class=\"gb-button gb-button-5779f14c gb-accordion__toggle\"><span class=\"gb-button-text\"><strong>Who owns the data?&nbsp;<\/strong><\/span><span class=\"gb-icon\"><svg xmlns=\"http:\/\/www.w3.org\/2000\/svg\" viewBox=\"0 0 448 512\" width=\"1em\" height=\"1em\" ariahidden=\"true\" role=\"img\" class=\"gb-accordion__icon\"><path d=\"M207.029 381.476L12.686 187.132c-9.373-9.373-9.373-24.569 0-33.941l22.667-22.667c9.357-9.357 24.522-9.375 33.901-.04L224 284.505l154.745-154.021c9.379-9.335 24.544-9.317 33.901.04l22.667 22.667c9.373 9.373 9.373 24.569 0 33.941L240.971 381.476c-9.373 9.372-24.569 9.372-33.942 0z\" fill=\"currentColor\"><\/path><\/svg><svg xmlns=\"http:\/\/www.w3.org\/2000\/svg\" viewBox=\"0 0 448 512\" width=\"1em\" height=\"1em\" ariahidden=\"true\" role=\"img\" class=\"gb-accordion__icon-open\"><path d=\"M240.971 130.524l194.343 194.343c9.373 9.373 9.373 24.569 0 33.941l-22.667 22.667c-9.357 9.357-24.522 9.375-33.901.04L224 227.495 69.255 381.516c-9.379 9.335-24.544 9.317-33.901-.04l-22.667-22.667c-9.373-9.373-9.373-24.569 0-33.941L207.03 130.525c9.372-9.373 24.568-9.373 33.941-.001z\" fill=\"currentColor\"><\/path><\/svg><\/span><\/button>\n\n\n<div class=\"gb-accordion__content\"><div class=\"gb-container gb-container-4cec67e5\">\n\n<p>The study data are owned by the study sponsor, the Raymond A. Wood Foundation (RAWF). RAWF decides how and with whom to share the data. NORD staff will have access to the data for activities related to support and maintenance of the Platform and will collect Platform-wide participation statistics. The specifics will be outlined in your informed consent.&nbsp;<\/p>\n\n<\/div><\/div>\n<\/div>\n<\/div>\n\n<div class=\"gb-container gb-container-4c051f64 gb-accordion\">\n<div class=\"gb-container gb-container-a99662fb gb-accordion__item\" data-transition=\"slide\">\n\n<button class=\"gb-button gb-button-b073903e gb-accordion__toggle\"><span class=\"gb-button-text\"><strong>Who will have access to Protected Health Information (PHI)?&nbsp;<\/strong><\/span><span class=\"gb-icon\"><svg xmlns=\"http:\/\/www.w3.org\/2000\/svg\" viewBox=\"0 0 448 512\" width=\"1em\" height=\"1em\" ariahidden=\"true\" role=\"img\" class=\"gb-accordion__icon\"><path d=\"M207.029 381.476L12.686 187.132c-9.373-9.373-9.373-24.569 0-33.941l22.667-22.667c9.357-9.357 24.522-9.375 33.901-.04L224 284.505l154.745-154.021c9.379-9.335 24.544-9.317 33.901.04l22.667 22.667c9.373 9.373 9.373 24.569 0 33.941L240.971 381.476c-9.373 9.372-24.569 9.372-33.942 0z\" fill=\"currentColor\"><\/path><\/svg><svg xmlns=\"http:\/\/www.w3.org\/2000\/svg\" viewBox=\"0 0 448 512\" width=\"1em\" height=\"1em\" ariahidden=\"true\" role=\"img\" class=\"gb-accordion__icon-open\"><path d=\"M240.971 130.524l194.343 194.343c9.373 9.373 9.373 24.569 0 33.941l-22.667 22.667c-9.357 9.357-24.522 9.375-33.901.04L224 227.495 69.255 381.516c-9.379 9.335-24.544 9.317-33.901-.04l-22.667-22.667c-9.373-9.373-9.373-24.569 0-33.941L207.03 130.525c9.372-9.373 24.568-9.373 33.941-.001z\" fill=\"currentColor\"><\/path><\/svg><\/span><\/button>\n\n\n<div class=\"gb-accordion__content\"><div class=\"gb-container gb-container-63aecd5a\">\n\n<p>All data, including those with PHI, will be stored in a password protected secure server. Access to PHI will be limited to:&nbsp;<\/p>\n\n\n\n<p>\u2022 Approved members of the Hypothalamic-Pituitary Brain Tumors Patient Registry research team&nbsp;<\/p>\n\n\n\n<p>\u2022 NORD staff, in cases where technical support is needed and with the permission of registry staff&nbsp;<\/p>\n\n\n\n<p>\u2022 With agreement from the Sponsor, NORD may conduct IRB-approved, cross-disease research using registry data.&nbsp;<\/p>\n\n\n\n<p>In all cases, your privacy will be protected. The Registry Advisory Board will evaluate all requests for data from researchers. Researchers will only be provided with the minimum data necessary to accomplish their research study goals. Data containing PHI will only be shared if the research cannot be done without it. The researchers will be required to sign a Confidentiality Agreement in which they promise to keep your information safe.&nbsp;<\/p>\n\n<\/div><\/div>\n<\/div>\n<\/div>\n\n<div class=\"gb-container gb-container-9966b81c gb-accordion\">\n<div class=\"gb-container gb-container-658175c9 gb-accordion__item\" data-transition=\"slide\">\n\n<button class=\"gb-button gb-button-e2c8208b gb-accordion__toggle\"><span class=\"gb-button-text\"><strong>What are the GDPR considerations?&nbsp;<\/strong><\/span><span class=\"gb-icon\"><svg xmlns=\"http:\/\/www.w3.org\/2000\/svg\" viewBox=\"0 0 448 512\" width=\"1em\" height=\"1em\" ariahidden=\"true\" role=\"img\" class=\"gb-accordion__icon\"><path d=\"M207.029 381.476L12.686 187.132c-9.373-9.373-9.373-24.569 0-33.941l22.667-22.667c9.357-9.357 24.522-9.375 33.901-.04L224 284.505l154.745-154.021c9.379-9.335 24.544-9.317 33.901.04l22.667 22.667c9.373 9.373 9.373 24.569 0 33.941L240.971 381.476c-9.373 9.372-24.569 9.372-33.942 0z\" fill=\"currentColor\"><\/path><\/svg><svg xmlns=\"http:\/\/www.w3.org\/2000\/svg\" viewBox=\"0 0 448 512\" width=\"1em\" height=\"1em\" ariahidden=\"true\" role=\"img\" class=\"gb-accordion__icon-open\"><path d=\"M240.971 130.524l194.343 194.343c9.373 9.373 9.373 24.569 0 33.941l-22.667 22.667c-9.357 9.357-24.522 9.375-33.901.04L224 227.495 69.255 381.516c-9.379 9.335-24.544 9.317-33.901-.04l-22.667-22.667c-9.373-9.373-9.373-24.569 0-33.941L207.03 130.525c9.372-9.373 24.568-9.373 33.941-.001z\" fill=\"currentColor\"><\/path><\/svg><\/span><\/button>\n\n\n<div class=\"gb-accordion__content\"><div class=\"gb-container gb-container-16f2f717\">\n\n<p>For individuals living outside the United States who choose to share information about themselves, the same protections for privacy and confidentiality are offered as in the United States. Residents of the European Union and Switzerland have additional particular rights related to personal information. This information is disclosed within the informed consent document. If an individual signs this document, they acknowledge that they are disclosing information that would otherwise be private. Privacy laws in an individual\u2019s country may have different protections than those provided in the United States.&nbsp;<\/p>\n\n\n\n<p>Registry participants who are residents of the European Union and Switzerland are entitled to:&nbsp;<\/p>\n\n\n\n<p>\u2022 Request to obtain access to and rectification or erasure of personal data;&nbsp;<\/p>\n\n\n\n<p>\u2022 Receive personal data in a portable, readily-accessible format;&nbsp;<\/p>\n\n\n\n<p>\u2022 Restrict or withdraw permission for the processing of personal information; and&nbsp;<\/p>\n\n\n\n<p>\u2022 Lodge a complaint with an appropriate supervisory authority.&nbsp;<\/p>\n\n<\/div><\/div>\n<\/div>\n<\/div>\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<figure class=\"wp-block-image size-large\"><img decoding=\"async\" width=\"1024\" height=\"195\" src=\"https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2024\/04\/banner-1-1024x195.png\" alt=\"HP Tumor register - shows boy and says your participation matters, join today.\" class=\"wp-image-9203\" srcset=\"https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2024\/04\/banner-1-1024x195.png 1024w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2024\/04\/banner-1-300x57.png 300w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2024\/04\/banner-1-768x146.png 768w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2024\/04\/banner-1-1536x292.png 1536w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2024\/04\/banner-1-18x3.png 18w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2024\/04\/banner-1.png 1579w\" sizes=\"(max-width: 1024px) 100vw, 1024px\" \/><\/figure>\n\n\n<div class=\"gb-container gb-container-1dd4741c alignfull\">\n<div class=\"gb-container gb-container-2c35d526\">\n\n<h2 class=\"wp-block-heading\">Together, we can make a difference in the lives of those living with hypothalamic-pituitary brain tumors. <\/h2>\n\n\n\n<p>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.<\/p>\n\n\n\n<a class=\"gb-button gb-button-2e08eeab gb-button-text\" href=\"https:\/\/hptumorregistry.iamrare.org\/\" target=\"_blank\" rel=\"noopener noreferrer\">Join us in our mission. Register today.<\/a>\n\n<\/div>\n\n\n<p><\/p>\n\n<\/div>\n\n\n<div style=\"height:60px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<figure class=\"wp-block-image size-large is-resized\"><img decoding=\"async\" width=\"1024\" height=\"192\" src=\"https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2024\/04\/logoFinal-1024x192.png\" alt=\"Hypothalamic Pituitary Brain Tumors Patient Registry Logo\n\" class=\"wp-image-9204\" style=\"width:547px;height:102px\" srcset=\"https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2024\/04\/logoFinal-1024x192.png 1024w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2024\/04\/logoFinal-300x56.png 300w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2024\/04\/logoFinal-768x144.png 768w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2024\/04\/logoFinal-18x3.png 18w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2024\/04\/logoFinal.png 1485w\" sizes=\"(max-width: 1024px) 100vw, 1024px\" \/><\/figure>\n\n\n\n<div style=\"height:34px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<p>To receive regular updates on Registry data, please email us at <a href=\"mailto:registry@rawoodfoundation.org\">registry@rawoodfoundation.org<\/a>.<\/p>\n\n\n\n<p>Access downloads of IRB approved Hypothalamic-Pituitary Brain Tumors Patient Registry Protocol and Informed Consent documents [LINK].<\/p>\n\n\n\n<p>For more information, contact Nathalie Kayadjanian, Ph.D., Scientific Advisor, or the registry coordinator at <a href=\"mailto:registry@rawoodfoundation.org\">registry@rawoodfoundation.org<\/a>.<\/p>\n\n\n\n<p>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 <a href=\"mailto:registry@rawoodfoundation.org\">registry@rawoodfoundation.org<\/a>.<\/p>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<h2 class=\"wp-block-heading has-text-align-center\">Latest Research News<\/h2>\n\n\n<ul class=\"wp-block-latest-posts__list is-grid columns-4 has-dates wp-block-latest-posts\"><li><div class=\"wp-block-latest-posts__featured-image aligncenter\"><a href=\"https:\/\/www.rawoodfoundation.org\/fr\/2026\/04\/01\/advancing-understanding-of-hyperphagia-in-cp\/\" aria-label=\"Advancing Understanding of Hyperphagia in CP\"><img decoding=\"async\" width=\"150\" height=\"150\" src=\"https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2026\/04\/Hy-150x150.png\" class=\"attachment-thumbnail size-thumbnail wp-post-image\" alt=\"Screen shot of published study with Hypothalamic-Pituitary Brain Tumors Patient Registry Logo\" style=\"\" srcset=\"https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2026\/04\/Hy-150x150.png 150w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2026\/04\/Hy-330x330.png 330w\" sizes=\"(max-width: 150px) 100vw, 150px\" \/><\/a><\/div><a class=\"wp-block-latest-posts__post-title\" href=\"https:\/\/www.rawoodfoundation.org\/fr\/2026\/04\/01\/advancing-understanding-of-hyperphagia-in-cp\/\">Advancing Understanding of Hyperphagia in CP<\/a><time datetime=\"2026-04-01T15:22:18+00:00\" class=\"wp-block-latest-posts__post-date\">April 1, 2026<\/time><\/li>\n<li><div class=\"wp-block-latest-posts__featured-image aligncenter\"><a href=\"https:\/\/www.rawoodfoundation.org\/fr\/2026\/03\/19\/treatment-priorities-in-craniopharyngioma\/\" aria-label=\"Treatment Priorities in Craniopharyngioma: Perspectives of Survivors and Caregivers\u00a0\"><img decoding=\"async\" width=\"150\" height=\"150\" src=\"https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2026\/03\/Treatment-Priorities-in-Craniopharyngioma-Perspectives-of-Survivors-and-Caregivers-1-150x150.png\" class=\"attachment-thumbnail size-thumbnail wp-post-image\" alt=\"\" style=\"\" \/><\/a><\/div><a class=\"wp-block-latest-posts__post-title\" href=\"https:\/\/www.rawoodfoundation.org\/fr\/2026\/03\/19\/treatment-priorities-in-craniopharyngioma\/\">Treatment Priorities in Craniopharyngioma: Perspectives of Survivors and Caregivers\u00a0<\/a><time datetime=\"2026-03-19T10:00:00+00:00\" class=\"wp-block-latest-posts__post-date\">March 19, 2026<\/time><\/li>\n<li><div class=\"wp-block-latest-posts__featured-image aligncenter\"><a href=\"https:\/\/www.rawoodfoundation.org\/fr\/2025\/07\/16\/new-frontiers-in-hypothalamic-obesity-research\/\" aria-label=\"New Frontiers in Hypothalamic Obesity Research\"><img decoding=\"async\" width=\"150\" height=\"150\" src=\"https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2025\/07\/Copy-of-Copy-of-Blog-Post-Image-150x150.png\" class=\"attachment-thumbnail size-thumbnail wp-post-image\" alt=\"Image of medications with title New Frontiers in Hypothalamic Obesity: Clinical Trials Offering Hope\" style=\"\" \/><\/a><\/div><a class=\"wp-block-latest-posts__post-title\" href=\"https:\/\/www.rawoodfoundation.org\/fr\/2025\/07\/16\/new-frontiers-in-hypothalamic-obesity-research\/\">New Frontiers in Hypothalamic Obesity Research<\/a><time datetime=\"2025-07-16T14:48:43+00:00\" class=\"wp-block-latest-posts__post-date\">July 16, 2025<\/time><\/li>\n<li><div class=\"wp-block-latest-posts__featured-image aligncenter\"><a href=\"https:\/\/www.rawoodfoundation.org\/fr\/2025\/06\/24\/cp-convening\/\" aria-label=\"International Experts Convene in Denver for 8th Postgraduate Course in Childhood Craniopharyngioma\"><img decoding=\"async\" width=\"150\" height=\"150\" src=\"https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2025\/06\/image005-150x150.jpg\" class=\"attachment-thumbnail size-thumbnail wp-post-image\" alt=\"Group pictured from post graduate course in childhood craniopharyngioma\" style=\"\" srcset=\"https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2025\/06\/image005-150x150.jpg 150w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2025\/06\/image005-330x330.jpg 330w\" sizes=\"(max-width: 150px) 100vw, 150px\" \/><\/a><\/div><a class=\"wp-block-latest-posts__post-title\" href=\"https:\/\/www.rawoodfoundation.org\/fr\/2025\/06\/24\/cp-convening\/\">International Experts Convene in Denver for 8th Postgraduate Course in Childhood Craniopharyngioma<\/a><time datetime=\"2025-06-24T16:56:43+00:00\" class=\"wp-block-latest-posts__post-date\">June 24, 2025<\/time><\/li>\n<\/ul>","protected":false},"excerpt":{"rendered":"<p>Ensemble, nous pouvons faire avancer la recherche Le registre des patients atteints de tumeurs c\u00e9r\u00e9brales hypothalamo-hypophysaires, cr\u00e9\u00e9 en 2024 par ... <a title=\"Registre des patients atteints de tumeurs c\u00e9r\u00e9brales hypothalamo-hypophysaires\" class=\"read-more\" href=\"https:\/\/www.rawoodfoundation.org\/fr\/hptumorregistry\/\" aria-label=\"En savoir plus sur le registre des patients atteints de tumeurs c\u00e9r\u00e9brales hypothalamo-hypophysaires\">Lire plus<\/a><\/p>","protected":false},"author":4,"featured_media":9203,"parent":0,"menu_order":32,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_acf_changed":false,"footnotes":""},"class_list":{"0":"post-9131","1":"page","2":"type-page","3":"status-publish","4":"has-post-thumbnail","6":"no-featured-image-padding"},"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.3 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Hypothalamic-Pituitary Brain Tumors Patient Registry<\/title>\n<meta name=\"description\" content=\"Explore the Hypothalamic-Pituitary Brain Tumors Patient Registry, advancing research, tracking outcomes, and improving care for rare pituitary disorders.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.rawoodfoundation.org\/fr\/registre-des-tumeurs\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Hypothalamic-Pituitary Brain Tumors Patient Registry\" \/>\n<meta property=\"og:description\" content=\"Explore the Hypothalamic-Pituitary Brain Tumors Patient Registry, advancing research, tracking outcomes, and improving care for rare pituitary disorders.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/www.rawoodfoundation.org\/fr\/registre-des-tumeurs\/\" \/>\n<meta property=\"og:site_name\" content=\"Raymond A. Wood Foundation\" \/>\n<meta property=\"article:publisher\" content=\"https:\/\/www.facebook.com\/rawoodfoundation\" \/>\n<meta property=\"article:modified_time\" content=\"2025-12-23T05:09:17+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2024\/04\/banner-1.png\" \/>\n\t<meta property=\"og:image:width\" content=\"1579\" \/>\n\t<meta property=\"og:image:height\" content=\"300\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/png\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:site\" content=\"@rawoodfound\" \/>\n<meta name=\"twitter:label1\" content=\"Est. reading time\" \/>\n\t<meta name=\"twitter:data1\" content=\"9 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\\\/\\\/schema.org\",\"@graph\":[{\"@type\":\"WebPage\",\"@id\":\"https:\\\/\\\/www.rawoodfoundation.org\\\/hptumorregistry\\\/\",\"url\":\"https:\\\/\\\/www.rawoodfoundation.org\\\/hptumorregistry\\\/\",\"name\":\"Hypothalamic-Pituitary Brain Tumors Patient Registry\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/www.rawoodfoundation.org\\\/#website\"},\"primaryImageOfPage\":{\"@id\":\"https:\\\/\\\/www.rawoodfoundation.org\\\/hptumorregistry\\\/#primaryimage\"},\"image\":{\"@id\":\"https:\\\/\\\/www.rawoodfoundation.org\\\/hptumorregistry\\\/#primaryimage\"},\"thumbnailUrl\":\"https:\\\/\\\/www.rawoodfoundation.org\\\/wp-content\\\/uploads\\\/2024\\\/04\\\/banner-1.png\",\"datePublished\":\"2024-04-02T14:35:10+00:00\",\"dateModified\":\"2025-12-23T05:09:17+00:00\",\"description\":\"Explore the Hypothalamic-Pituitary Brain Tumors Patient Registry, advancing research, tracking outcomes, and improving care for rare pituitary disorders.\",\"breadcrumb\":{\"@id\":\"https:\\\/\\\/www.rawoodfoundation.org\\\/hptumorregistry\\\/#breadcrumb\"},\"inLanguage\":\"fr-FR\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\\\/\\\/www.rawoodfoundation.org\\\/hptumorregistry\\\/\"]}]},{\"@type\":\"ImageObject\",\"inLanguage\":\"fr-FR\",\"@id\":\"https:\\\/\\\/www.rawoodfoundation.org\\\/hptumorregistry\\\/#primaryimage\",\"url\":\"https:\\\/\\\/www.rawoodfoundation.org\\\/wp-content\\\/uploads\\\/2024\\\/04\\\/banner-1.png\",\"contentUrl\":\"https:\\\/\\\/www.rawoodfoundation.org\\\/wp-content\\\/uploads\\\/2024\\\/04\\\/banner-1.png\",\"width\":1579,\"height\":300,\"caption\":\"HP Tumor register - shows boy and says your participation matters, join today.\"},{\"@type\":\"BreadcrumbList\",\"@id\":\"https:\\\/\\\/www.rawoodfoundation.org\\\/hptumorregistry\\\/#breadcrumb\",\"itemListElement\":[{\"@type\":\"ListItem\",\"position\":1,\"name\":\"Home\",\"item\":\"https:\\\/\\\/www.rawoodfoundation.org\\\/\"},{\"@type\":\"ListItem\",\"position\":2,\"name\":\"Hypothalamic-Pituitary Brain Tumors Patient Registry\"}]},{\"@type\":\"WebSite\",\"@id\":\"https:\\\/\\\/www.rawoodfoundation.org\\\/#website\",\"url\":\"https:\\\/\\\/www.rawoodfoundation.org\\\/\",\"name\":\"Raymond A. Wood Foundation\",\"description\":\"The mission of the RAWF is to provide quality of life support for childhood brain tumor survivors and their families.\",\"publisher\":{\"@id\":\"https:\\\/\\\/www.rawoodfoundation.org\\\/#organization\"},\"potentialAction\":[{\"@type\":\"SearchAction\",\"target\":{\"@type\":\"EntryPoint\",\"urlTemplate\":\"https:\\\/\\\/www.rawoodfoundation.org\\\/?s={search_term_string}\"},\"query-input\":{\"@type\":\"PropertyValueSpecification\",\"valueRequired\":true,\"valueName\":\"search_term_string\"}}],\"inLanguage\":\"fr-FR\"},{\"@type\":\"Organization\",\"@id\":\"https:\\\/\\\/www.rawoodfoundation.org\\\/#organization\",\"name\":\"Raymond A. Wood Foundation\",\"url\":\"https:\\\/\\\/www.rawoodfoundation.org\\\/\",\"logo\":{\"@type\":\"ImageObject\",\"inLanguage\":\"fr-FR\",\"@id\":\"https:\\\/\\\/www.rawoodfoundation.org\\\/#\\\/schema\\\/logo\\\/image\\\/\",\"url\":\"https:\\\/\\\/www.rawoodfoundation.org\\\/wp-content\\\/uploads\\\/2023\\\/07\\\/Raymond-A-Wood-Foundation-logo.webp\",\"contentUrl\":\"https:\\\/\\\/www.rawoodfoundation.org\\\/wp-content\\\/uploads\\\/2023\\\/07\\\/Raymond-A-Wood-Foundation-logo.webp\",\"width\":470,\"height\":128,\"caption\":\"Raymond A. Wood Foundation\"},\"image\":{\"@id\":\"https:\\\/\\\/www.rawoodfoundation.org\\\/#\\\/schema\\\/logo\\\/image\\\/\"},\"sameAs\":[\"https:\\\/\\\/www.facebook.com\\\/rawoodfoundation\",\"https:\\\/\\\/x.com\\\/rawoodfound\"]}]}<\/script>\n<!-- \/ Yoast SEO plugin. -->","yoast_head_json":{"title":"Registre des patients atteints de tumeurs c\u00e9r\u00e9brales hypothalamo-hypophysaires","description":"Explorez le registre des patients atteints de tumeurs c\u00e9r\u00e9brales hypothalamo-hypophysaires, qui permet de faire progresser la recherche, de suivre les r\u00e9sultats et d'am\u00e9liorer les soins pour les maladies hypophysaires rares.","robots":{"index":"index","follow":"follow","max-snippet":"max-snippet:-1","max-image-preview":"max-image-preview:large","max-video-preview":"max-video-preview:-1"},"canonical":"https:\/\/www.rawoodfoundation.org\/fr\/registre-des-tumeurs\/","og_locale":"fr_FR","og_type":"article","og_title":"Hypothalamic-Pituitary Brain Tumors Patient Registry","og_description":"Explore the Hypothalamic-Pituitary Brain Tumors Patient Registry, advancing research, tracking outcomes, and improving care for rare pituitary disorders.","og_url":"https:\/\/www.rawoodfoundation.org\/fr\/registre-des-tumeurs\/","og_site_name":"Raymond A. Wood Foundation","article_publisher":"https:\/\/www.facebook.com\/rawoodfoundation","article_modified_time":"2025-12-23T05:09:17+00:00","og_image":[{"width":1579,"height":300,"url":"https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2024\/04\/banner-1.png","type":"image\/png"}],"twitter_card":"summary_large_image","twitter_site":"@rawoodfound","twitter_misc":{"Est. reading time":"9 minutes"},"schema":{"@context":"https:\/\/schema.org","@graph":[{"@type":"WebPage","@id":"https:\/\/www.rawoodfoundation.org\/hptumorregistry\/","url":"https:\/\/www.rawoodfoundation.org\/hptumorregistry\/","name":"Registre des patients atteints de tumeurs c\u00e9r\u00e9brales hypothalamo-hypophysaires","isPartOf":{"@id":"https:\/\/www.rawoodfoundation.org\/#website"},"primaryImageOfPage":{"@id":"https:\/\/www.rawoodfoundation.org\/hptumorregistry\/#primaryimage"},"image":{"@id":"https:\/\/www.rawoodfoundation.org\/hptumorregistry\/#primaryimage"},"thumbnailUrl":"https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2024\/04\/banner-1.png","datePublished":"2024-04-02T14:35:10+00:00","dateModified":"2025-12-23T05:09:17+00:00","description":"Explorez le registre des patients atteints de tumeurs c\u00e9r\u00e9brales hypothalamo-hypophysaires, qui permet de faire progresser la recherche, de suivre les r\u00e9sultats et d'am\u00e9liorer les soins pour les maladies hypophysaires rares.","breadcrumb":{"@id":"https:\/\/www.rawoodfoundation.org\/hptumorregistry\/#breadcrumb"},"inLanguage":"fr-FR","potentialAction":[{"@type":"ReadAction","target":["https:\/\/www.rawoodfoundation.org\/hptumorregistry\/"]}]},{"@type":"ImageObject","inLanguage":"fr-FR","@id":"https:\/\/www.rawoodfoundation.org\/hptumorregistry\/#primaryimage","url":"https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2024\/04\/banner-1.png","contentUrl":"https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2024\/04\/banner-1.png","width":1579,"height":300,"caption":"HP Tumor register - shows boy and says your participation matters, join today."},{"@type":"BreadcrumbList","@id":"https:\/\/www.rawoodfoundation.org\/hptumorregistry\/#breadcrumb","itemListElement":[{"@type":"ListItem","position":1,"name":"Home","item":"https:\/\/www.rawoodfoundation.org\/"},{"@type":"ListItem","position":2,"name":"Hypothalamic-Pituitary Brain Tumors Patient Registry"}]},{"@type":"WebSite","@id":"https:\/\/www.rawoodfoundation.org\/#website","url":"https:\/\/www.rawoodfoundation.org\/","name":"Fondation Raymond A. Wood","description":"La mission de la RAWF est d'apporter un soutien \u00e0 la qualit\u00e9 de vie des survivants de tumeurs c\u00e9r\u00e9brales infantiles et de leurs familles.","publisher":{"@id":"https:\/\/www.rawoodfoundation.org\/#organization"},"potentialAction":[{"@type":"SearchAction","target":{"@type":"EntryPoint","urlTemplate":"https:\/\/www.rawoodfoundation.org\/?s={search_term_string}"},"query-input":{"@type":"PropertyValueSpecification","valueRequired":true,"valueName":"search_term_string"}}],"inLanguage":"fr-FR"},{"@type":"Organization","@id":"https:\/\/www.rawoodfoundation.org\/#organization","name":"Fondation Raymond A. Wood","url":"https:\/\/www.rawoodfoundation.org\/","logo":{"@type":"ImageObject","inLanguage":"fr-FR","@id":"https:\/\/www.rawoodfoundation.org\/#\/schema\/logo\/image\/","url":"https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2023\/07\/Raymond-A-Wood-Foundation-logo.webp","contentUrl":"https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2023\/07\/Raymond-A-Wood-Foundation-logo.webp","width":470,"height":128,"caption":"Raymond A. Wood Foundation"},"image":{"@id":"https:\/\/www.rawoodfoundation.org\/#\/schema\/logo\/image\/"},"sameAs":["https:\/\/www.facebook.com\/rawoodfoundation","https:\/\/x.com\/rawoodfound"]}]}},"_links":{"self":[{"href":"https:\/\/www.rawoodfoundation.org\/fr\/wp-json\/wp\/v2\/pages\/9131","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.rawoodfoundation.org\/fr\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/www.rawoodfoundation.org\/fr\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/www.rawoodfoundation.org\/fr\/wp-json\/wp\/v2\/users\/4"}],"replies":[{"embeddable":true,"href":"https:\/\/www.rawoodfoundation.org\/fr\/wp-json\/wp\/v2\/comments?post=9131"}],"version-history":[{"count":28,"href":"https:\/\/www.rawoodfoundation.org\/fr\/wp-json\/wp\/v2\/pages\/9131\/revisions"}],"predecessor-version":[{"id":18110,"href":"https:\/\/www.rawoodfoundation.org\/fr\/wp-json\/wp\/v2\/pages\/9131\/revisions\/18110"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.rawoodfoundation.org\/fr\/wp-json\/wp\/v2\/media\/9203"}],"wp:attachment":[{"href":"https:\/\/www.rawoodfoundation.org\/fr\/wp-json\/wp\/v2\/media?parent=9131"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}