IHRF/NDRI Donor Program

One of the main reasons for the slow progress of chronic intracranial hypertension research has been a lack of human tissue to study. In fact, no researcher has examined brain tissue of critical cerebrospinal drainage areas from a patient with idiopathic IH in over 125 years.

Donated brain tissue can show physiological changes that may occur over time in the brain of a chronic IH patient. And it could help researchers understand precisely what goes wrong with the process of CSF exiting from the brain that ultimately leads to intracranial hypertension.

The Intracranial Hypertension Research Foundation recently joined the Rare Disease Biospecimen Alliance, a project of The National Disease Research Interchange (NDRI), to establish the first donor program for chronic IH. Since 1980, the non-profit NDRI has received funding from the National Institutes of Health (NIH) so that researchers from universities, medical centers and hospitals through out the United States can receive the specimens they need to advance their studies. (They have provided more than 180,000 tissue specimens in the last two and a half decades.) As a result, NDRI has facilitated advances in many areas of medical research.

Under the Rare Disease Biospecimen Alliance, NDRI will register IH patients enrolled in the IH Registry who would like to become donors; collect donated tissues through NDRI coordinators located across the United States; and distribute donated tissue to pre-approved biomedical researchers. This partnership also represents the first time that actual research on donated tissues will be correlated with the donor’s clinical medical history (stored in the IH Registry database). Like the IH Registry, NDRI strictly adheres to government regulations and guidelines regarding consent and confidentiality.

If you would to like to learn more about the donor program, please fill out the form below: (Registry form)