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