In the News (continued)
An Important Announcement About the IH Registry
It is with great sadness that the Intracranial Hypertension Research Foundation is announcing the closure of our research project, the Intracranial Hypertension Registry. As of this month, June 2020, the IH Registry has ceased all operations. This was an extremely difficult decision for us to make. Like many others who have been financially impacted by the Covid-19 pandemic,...Read More »
Mortality and IIH
The IH Registry (IHR), a project of the Intracranial Hypertension Research Foundation and Oregon Health & Science University, has published a study investigating the causes of death in IIH patients in the March 27, 2020 issue of Neurology, the journal of the American Academy of Neurology. It is the first time ever that researchers have looked at whether mortality in...Read More »
IH Registry Study on Emergency Department Usage by IIH Patients
IH Registry Study Examines Emergency Department Usage by IIH Patients An IH Registry study examining emergency department (EDs) usage by previously diagnosed idiopathic intracranial patients has been published in the International Journal of Health Care Quality Assurance. Since IIH can be a debilitating disorder that is difficult to identify and treat, a failure to manage IIH symptoms may force patients to...Read More »
Diamox Sequels Update
Many of you have contacted IHRF regarding the discontinuation of brand Diamox Sequels 500 mg extended release (ER) capsules, manufactured by Teva Pharmaceuticals. There are four pharmaceutical companies that manufacture generic acetazolamide extended release 500mg capsules. They are: Ingenus Pharmaceuticals http://www.ingenus.com Heritage Pharmaceuticals http://www.heritagepharma.com Nostrum Pharmaceuticals http://www.nostrumpharma.com/contact-us.aspx Zydus Pharmaceuticals http://www.zydususa.com To the best of our knowledge, these are the only companies in the U.S....Read More »
IH Registry and Pediatric Intracranial Hypertension
Children represent one of the fastest growing groups of IH patients, yet there has been relatively little research on this group. A new IH Registry study focusing on pediatric intracranial hypertension was recently published in the journal Pediatric Neurology. Researchers at the IH Registry and at Nationwide Childrens’ Hospital in Columbus, Ohio examined different aspects of how the disorder...Read More »
IH Registry Study Finds Kidney Stones Are NOT A Common Side Effect of Daily Acetazolamide Treatment
A new study from the IH Registry, to be published in an upcoming 2016 issue of the Journal of Neuro-Ophthalmology, examines daily acetazolamide (Diamox) use and its relationship to calcium phosphate kidney stones (nephrolithiasis), and compared the clinical presentation of IIH in the patients in the study who developed kidney stones with those who did not develop kidney stones. Previous...Read More »
Journal of Pediatric Neurology, Pediatric IH Issue
September 2015—IHRF Scientific Advisor Conrad Johanson, Ph.D.,whose areas of interest include the choroid plexus (the site in the brain where CSF is produced), and the development of more effective drugs to treat IH, has co-authored new research published in the latest issue of Journal of Pediatric Neurology. This issue also marks the first time an issue of the Journal...Read More »
IH Registry Acetazolamide Use & Pregnancy Study
April 2013— A multi-year, groundbreaking IH Registry study, “The use of acetazolamide during pregnancy in intracranial hypertension patients,” which examined the effects of acetazolamide (Diamox) use in pregnant women with IH and their children was recently published in the March 2013 issue of the Journal of Neuro-Ophthalmology, the journal of the North American Neuro-Ophthalmology Society (NANOS). It is the...Read More »
The IH Registry and the Global Rare Diseases Registry
IHRF, IH Registry Selected For NIH Global Rare Diseases Registry (GRDR) September 2012- The Office of Rare Diseases Research (ORDR), National Center for Advancing Translational Sciences (NCATS), NIH in collaboration with Patient Crossroads, Children Hospital of Philadelphia and WebMD, has launched a pilot program to establish a Global Rare Diseases Patient Registry and Data Repository (GRDR). The Intracranial Hypertension Research Foundation...Read More »
IHRF Scientific Advisor Awarded NSBRI/NASA Grant to Study Non-Invasive Pressure Monitoring
IHRF Scientific Advisor Awarded NSBRI/NASA Grant to Study Non-Invasive Pressure Monitoring August, 2012- Sinai Hospital of Baltimore and Michael Williams, M.D., an IHRF Scientific Advisor, a member of the IHRF NASA advisory group, and the medical director of The Sandra and Malcolm Berman Brain & Spine Institute (BSI) at LifeBridge Health in Baltimore, have received an approximately $1 million grant from...Read More »
IHRF/NASA Research
IHRF Part Of NASA Research Team On Microgravity-Induced IH October 5, 2011- IHRF’s co-founder, Emanuel Tanne, M.D. and three of its Scientific Advisors—Conrad Johanson, Ph.D., Steven Katz, M.D and Michael Williams, M.D.— were appointed earlier this year to a special group of researchers and clinicians at NASA dealing with the problem of microgravity-induced intracranial hypertension and papilledema that some...Read More »
Patient Survey: IH Registry Enrollment and Follow-up Process
Patient Survey: IH Registry Seeks Your Help To Improve Registry Enrollment Process If you are currently enrolled in IH Registry or have requested an enrollment packet from the Registry in the past, we want to hear from you! We strive to make the enrollment and follow-up process as easy as possible while collecting enough important information for researchers. Thanks to your...Read More »