Research and the IHRF/NDRI Donor Program

In more than a hundred years, no one has been able to obtain and study an actual brain with intact meninges from a patient with idiopathic intracranial hypertension (IIH). As a result, little is known about the apparent abnormal CSF hydrodynamics in IIH, especially concerning CSF egress. Understanding the pathophysiology of CSF egress will significantly add to our ability to better treat and ultimately cure chronic IH.

In order to stimulate research by overcoming this lack of critical tissues, IHRF recently signed an agreement with the National Disease Research Interchange (NDRI), to become a member of the Rare Disease Biospecimen Alliance. NDRI is a non-profit organization funded by the National Institutes of Health. In the past 25 years, NDRI has been involved in donor tissue retrieval through its national collection network. The agreement’s underlying purpose is to obtain post-mortem brain donation from confirmed intracranial hypertension (IH) patients with either primary (idiopathic intracranial hypertension) or secondary IH.

IHRF will refer confirmed IH patients, who have expressed an interest in being donors, and are enrolled in the Intracranial Hypertension Registry to NDRI. NDRI will then provide the patients with information about the program and obtain consent; retrieve tissue and ultimately supply specimens to prior approved researchers who have signed up with NDRI. Once tissue is obtained, the IH Registry will provide (with appropriate written consent) the donor’s clinical history, as well as neuro-imaging studies from its database, to NDRI. This de-identified information will be available to researchers to correlate to their laboratory research. This unique arrangement will further enhance the knowledge gained.

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