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Some of you may already be familiar with the Intracranial Hypertension Research Foundation (IHRF). If you are not, I strongly urge you to take a moment to visit their website at the IHR Foundation. The IHRF is the one organization actively organizing IH research. They have developed a patient registry, which as explained below, is imperative to further research funds for IH. This registry is a tool which can effectively open the eyes of the medical community on all aspects of IH, and give IH the research and recognition that is so long overdue.
Joining the registry is quite simple. Simply visit The IH Registry Page for more information. There is contact information readily available to you, should you have questions or run into difficulties. This team responds in a prompt, informative, courteous manner. It is urgent every IH patient join - we need to get our voices heard, and show who we really are, without having the reality of this condition minimized by outdated research! ~Heather~
The Intracranial Hypertension Research Foundation (IHRF) is a non-profit, tax exempt charity, which supports, encourages and organizes IH research. There has never before been a medical registry, anywhere in the world, for patients with Intracranial Hypertension, despite the fact that cases of IH have been documented in the medical literature as far back as the 16th century! 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. A patient registry also provides researchers with the patients they need for studies (including clinical trials) 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 Patient 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 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. Current Registry projects include a genetics study with the University of Ohio, a health economics study and the development of a neuro-imaging library. Why enroll?
Every person’s experience with chronic IH is unique and can help further knowledge about the disorder, which could lead to breakthroughs in treatment. 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 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. For the first time, there will be a wealth of information available to scientists and researchers who are eager to find out what causes IH and what can be done to cure it. Without this vital information, those who are most interested in unlocking the mysteries of IH would lack sufficient data to generate valid conclusions. A registry is a resource for researchers who may conduct clinical trials on new methods of treatment. If you are in the Registry you may have a better opportunity, if you are selected, and so choose, to participate in clinical trials of new drugs and treatments. Numbers count! If you and thousands of other patients join the Registry, the data will reveal that IH affects many different people, regardless of age, gender, race and nationality. It will also illuminate the fact that IH deserves a higher profile in the health-care universe and a greater commitment of research dollars. The Registry is the initial stepping stone on the road to the cure. We MUST understand the basic facts about Intracranial Hypertension before we can conquer it. JOIN THE REGISTRY AND BE PART OF THE SOLUTION! For more information go to: IHR Registry Information. OR you may contact the IHR Foundation directly (below), and ask about the IH registry! Intracranial Hypertension Research Foundation
Phone: (360) 693-IHRF (4473)
Fax: (360) 694-7062
Email: contact@IHRFoundation.org 
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