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Intracranial Hypertension Registry

Director: Tanne, Emanuel, M.D.

Summary:

The Intracranial Hypertension Registry is a joint project of the Casey Eye Institute at Oregon Health & Science University and the Intracranial Hypertension Research Foundation of Vancouver, Washington.

"By facilitating access to detailed, comprehensive information about large numbers of IH patients, the IH Registry strives to stimulate IH research; enhance the quality of research findings; promote the development of new diagnostic and treatment modalities; support clinical trials and highlight the importance of IH in the competition for research dollars. Access to clinical trials also gives patients an opportunity to directly contribute to better quality of care."

Affiliations:

People:

Resources:

Services

  • IHRF/NDRI Brain Tissue Donor Program ( Access service )

    The Intercranial Hypertension Research Foundation has joined with the National Disease Research Interchange (NDRI) to develop the first brain tissue donor program for chronic IH. This partnership represents the first time that actual research on donated tissues will be correlated with the donor's clinical medical history, kept at the IH Registry Database.

    For more information about participating in this project or on donor patient referral, please contact the IH Registry at ihreg@ohsu.edu or 503.418.2141.

  • IHRF/OHSU neuro-imaging library ( Access service )

    "Imaging studies are an important tool for physicians diagnosing and treating chronic IH. These studies— MRIs, MRAs.,MRVs, X-Ray, CT scans and shunt-o-grams—also offer a wealth of valuable information to IH researchers.

    In 2007, IHRF established the IHRF-OHSU Neuro-Radiology Imaging Library for chronic IH, a partnership between the Foundation and the Neuro-Radiology department at Oregon Health & Science University (OHSU) in Portland, Oregon. The Imaging Library is run as a project of the IH Registry and serves as the repository for imaging studies of patients enrolled in the IH Registry.

    For the first time, researchers from around the world have the opportunity to examine imaging studies of chronic IH patients’ brains and skulls for changes related to intracranial hypertension. Questions regarding the physical progression of chronic IH, the development of an empty sella or a Chiari malformation and whether imaging can accurately indicate intracranial pressure non-invasively can now be examined and may ultimately be answered by studying the collection of the Imaging Library. The collection may also reveal why some patients develop papilledema, headache, pulse-synchronous tinnitus, etc. while others do not."

  • Information for patients suffering from Intracranial Hypertension ( Service )

    The Intracranial Hypertension Registry makes available brochures for patients in both English and Spanish. These documents explain the Registry's work and how becoming part of the Registry can benefit the patient.

    Relevant documents can be requested by email. Contact ihreg@ohsu.edu for the necessary forms or more information.

  • Intracranial Hypertension Registry referral information for physicians ( Service )

    The IH Registry is open to patients with a confirmed diagnosis of idiopathic intracranial hypertension (pseudotumor cerebri, benign intracranial hypertension, primary intracranial hypertension) or secondary intracranial hypertension. There is no cost to patients for joining the IH Registry or to their physicians for submitting health information. The registry does not generally have funds available to compensate physicians for their time or out-of-pocket costs. There is a cost-recovery fee for providing IH Registry Data to researchers; the amount varies with the complexity of the specific request.

    Relevant documents can be requested by email. Contact ihreg@ohsu.edu for the necessary forms or more information.


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Last updated: 2012-08-21T15:01:17.366-05:00

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The eagle-i Consortium is supported by NIH Grant #5U24RR029825-02 / Copyright 2016