The IH Registry

A patient registry is a database of medical information for a particular disease or disorder, which researchers can then use to study the illness. It is considered a necessary building block for medical research, especially for a disorder like chronic IH that has been neglected for so long. As science and technology evolve, a patient registry is becoming increasingly important as a key tool in medical breakthroughs for better treatments and the discovery of a cure. Read New York Times Article on the Importance of Patient Registries

A patient registry also provides researchers with the patients they need for studies (including clinical trials for new drugs, devices or surgical techniques) and officially documents an illness and its effects, which is crucial when it comes to educating others (including medical professionals, public policy makers and the general public) about that illness.

One of IHRF’s first projects was to establish the Intracranial Hypertension Registry in 2003. The IH Registry is run in partnership with Oregon Health & Science University in Portland, Oregon. It is the first and only patient registry of its kind for chronic intracranial hypertension in the world. It represents the largest collection of medical data on chronic IH patients ever compiled and continues to grow. The Registry is international in scope, with patients enrolled from 37 countries; it also welcomes inquiries for collaborative research from researchers outside the US.

The NIH/NCATS GRDR Program
Global Rare Diseases Patient Registry Data Repository (GRDR)
The IH Registry is a member of GRDR. Our de-identified data integration into the GRDR will allow query by investigators to accelerate research across all rare diseases and to develop novel diagnostics and therapeutics for patient benefit.

Donor Program With The National Disease Research Interchange (NDRI)
In 2006, the IH Registry launched the first brain tissue donor program as a project of the Registry, in conjunction with the National Disease Research Interchange (NDRI), since one of the key reasons for the slow progression of IH research has been a lack of human tissue to study. Registry participants may elect to enroll in this innovative program, designed to deliver donor tissue directly to researchers registered with NDRI. 

The Neuro-Imaging Library
The IH Registry expanded to include a global neuro-imaging library, which, currently, has approximately 11,000 imaging studies in its collection, from IH patients enrolled in the IH Registry. Such studies can provide important clues to etiology, anatomical issues and long-term effects of chronic IH, as well as a greater understanding of IH and other neural hydrodynamic disorders.

Some IH Registry Research Achievements:

• IH Registry Provides Research Resource Data to NIH-Funded Database Built By OHSU, Harvard, 7 Other Institutions
• Two IH Registry studies are published in Obesity Review & Journal of Women’s Health.
• IHRF Part Of NASA Research Team On Microgravity-Induced IH
• Is Diamox Safe For Pregnant Women with IH? IH Registry Study on Diamox Use & Pregnancy Published in NANOS Journal
• IHRF, IH Registry Selected For NIH Global Rare Diseases Registry (GRDR)

Why enroll?
You can help make research happen by enrolling in the IH Registry. Every person’s experience with chronic IH is unique and can help further knowledge about the disorder, which can lead to better, more effective treatments. Enrolling in the IH Registry is an important and meaningful way to help in the search for a cure.

If you have been diagnosed with chronic intracranial hypertension (i.e. idiopathic intracranial hypertension, pseudotumor cerebri, benign intracranial hypertension, secondary intracranial hypertension), you are eligible to enroll, regardless of gender, age, or country of residence. Enrollment is free. The IH Registry is HIPAA-compliant and adheres to all U.S. government, state and university patient confidentiality regulations. All information in the IH Registry is secure and patients are never personally identified.

To learn more about the IH Registry, please fill out the form below: