Research and the Neuro-Imaging Library
Radiographic image studies were not initially envisioned as part of the IH Registry database. However, over time, the Foundation realized that the addition of an electronic image library to the IH Registry would greatly enhance its research value and the prospects for better management and understanding of chronic IH. The Neuro-Imaging Library was established in 2007 and is a project of the IH Registry in conjunction with the Oregon Health & Science University (OHSU) Radiology Department (Neuro-radiology section) and the OHSU Hospital Imaging Support.
Sequential imaging studies such as CT and MRI scans are routine in the management of chronic IH; the average IH Registry patient has undergone at least three studies. With a growing population of more than 800 patients now enrolled in the IH Registry, these studies could reveal significant facts about intracranial hypertension.
Value of the Neuro-Imaging Library
Medical records often include reports of imaging studies prepared by radiologists, but these reports can sometimes be vague and may be based on sparse clinical information frequently provided by a single referring physician who may be unfamiliar with much of the patient’s history. As a result, image study reports contained within medical records do not always present a reliable picture of the patient’s imaging study experience.
Yet, imaging studies can also provide unique information that is often pivotal to understanding the patient’s situation. The Neuro-Imaging Library provides a structure for collection, storage, retrieval, analysis and interpretation of large volumes of image data, as well as for correlation of the data with long-term clinical and laboratory data already in the IH Registry database.
Use of the Neuro-Imaging Library
The IH Registry obtains digital image studies files from hospitals and imaging centers identified by patients and physicians. The files are then transferred to the IH Registry database. Data from the imaging library is expected to be used in multiple neuro-radiology research projects within OHSU, as well as collaborative studies with interested researchers outside of OHSU. Additionally, the IH Registry will make these imaging studies available for independent research to qualified investigators from other institutions in the U.S. and internationally, who are interested in such areas of research as neuro-radiology, neuro-surgery, neuro-ophthalmology, pediatrics and epidemiology.