The IH Registry is a repository (library) of patient questionnaires, medical records, and imaging studies, utilizing an electronic database to facilitate the study of Intracranial Hypertension. The purpose of the Registry is to further medical research by providing researchers with quality data for studies. It also serves to provide enrolled patients with information about latest research studies
(including clinical trials for new drugs, interventional devices, and surgical techniques). The Registry maintains annual follow-up with enrolled patients to document their long-term experience with this disorder and medical outcomes with treatments. The Registry is providing the essential building blocks for medical professionals, public policy makers, and the general public to further the understanding and knowledge base about Intracranial Hypertension. Why enroll in the Registry? A rare disease remains an unknown until patient experiences are matched with researchers. As a patient (or the parent of a pediatric patient), you can make better and more accurate research happen with your enrollment. Each patient’s experience with IH is unique—you are one person with symptoms and responses to treatments. In the Registry, WE become 2,000 patients presenting all aspects of symptomology, medication response, surgical history, and a commitment to advance the search for a cure! If you are a diagnosed patient with intracranial hypertension (i.e. idiopathic intracranial hypertension, or secondary intracranial hypertension, or with older names: pseudotumor cerebri, benign intracranial hypertension), you are eligible to enroll, regardless of gender, age, or country of residence. There is no cost to enroll in the Registry. The IH Registry adheres to all United States government, state, and university patient confidentiality regulations. All information in the Registry is secure. Patient information is stored in a secure database. Identifying information will not be disclosed at any time. The Registry operates under the Oregon Health & Science University (OHSU) Institutional Review Board (eIRB #1010, Principle Investigator: Emanuel Tanne, M.D.). If you have any questions or concerns, please contact the Registry at [email protected] or 503-418-2141.
