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Intracranial Hypertension Research Foundation

An Important Announcement About the IH Registry

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, we have tried our best to come up with an alternative to closing the IH Registry. But after 17 years and with expenses exceeding $10,000 per month, it has become no longer economically possible for IHRF to fund and operate the Registry.

If you are enrolled in the IH Registry, you do not need to do anything concerning your records. All participant records—digital, paper, imaging etc.—will be destroyed in compliance with HIPPA and Oregon Health & Science University regulation. All data in the IH Registry database will also be destroyed.

We would like to thank all of you who took the time to enroll and take part in the IH Registry. You’ve helped contribute to important, novel research and expand the growing body of knowledge about chronic IH.

We would like recognize the efforts of more than 70 IH Registry volunteers—without whom the work of the Registry would not have been possible—including physicians, researchers, University volunteers, graduate OHSU MPH students and pre-med students. We would also like to thank our Senior Volunteer Manager, Ralpha Newton. One word describes the nearly 17 years of Ralpha’s contributions as a volunteer: indispensable!

Our deep gratitude to our IH Registry Research Coordinators, who oversaw the day-to-day function of the IH Registry, streamlined data organization, and greatly assisted in all aspects of research, from ideas to publication:

IH Registry Research Coordinators:

Roshanthi Weerasinghe, M.P.H.
Brenna Lobb, M.P.H.
Sarah Golden, B.S
Jonathan Au, M.P.H.
Carin Waslo, M.P.H.
Veda Varada, B.S.
Nick Miller, B.S.
Sam Hermes, M.P.H.

Finally, we remain hopeful to see that interest in chronic IH continues to grow. And we are gratified that the IH Registry has helped play a role in that process and served as a model for other patient registries.

IHRF will continue to be a resource for the IH community. As always, we welcome your input as we plan our next steps.

Thank you,
IHRF

Published Research of the IH Registry

Mortality among patients with idiopathic intracranial hypertension enrolled in the IH Registry.
Hermes SM, Miller NR, Waslo CS, Benes SC, Tanne E.Neurology. 2020 Mar 27:

Emergency department utilization among individuals with idiopathic intracranial hypertension.
Murphy S, Friesner DL, Rosenman R, Waslo CS, Au J, Tanne E.Int J Health Care Qual Assur. 2019 Feb 11;32(1):152-163

Manifestations of Pediatric Intracranial Hypertension From the Intracranial Hypertension Registry.
Aylward SC, Waslo CS, Au JN, Tanne E. Pediatr Neurol. 2016 Aug;61:76-82.

Acetazolamide-Induced Nephrolithiasis in Idiopathic Intracranial Hypertension Patients.
Au JN, Waslo CS, McGwin G Jr, Huisingh C, Tanne E.J Neuroophthalmol. 2016 Jun;36(2):126-30.
  
The use of acetazolamide during pregnancy in intracranial hypertension patients.
Falardeau J, Lobb BM, Golden S, Maxfield SD, Tanne E.J Neuroophthalmol. 2013 Mar;33(1):9-12.

Idiopathic intracranial hypertension in the USA: the role of obesity in establishing prevalence and healthcare costs.
Friesner D, Rosenman R, Lobb BM, Tanne E.Obes Rev. 2011 May;12(5):e372-80.
 
Weight and visual field deficits in women with idiopathic intracranial hypertension.
Baldwin MK, Lobb B, Tanne E, Egan R.J Womens Health (Larchmt). 2010 Oct;19(10):1893-8.
 
Report on the second Intracranial Hypertension Research Foundation conference.
Tanne E.Cerebrospinal Fluid Res. 2008 Aug 13;5:13

Unpublished IH Registry Research: Conference Presentations and Posters



Long Term Outcomes in IIH Patients Who Underwent Bariatric Surgery
Samuel Hermes, M.P.H. (OHSU), et al. 2020 

Association of Intracranial Hypertension and Ehler Danlos Syndrome
Nickolas Miller, M.S. (OHSU), et al. 2020

Acquired Chiari Malformation in IIH Patients Secondary to Chronic Distal
CSF Leakage
Emanuel Tanne, M.D. (IHRF, OHSU), et al. 2019

The Intracranial Hypertension Registry
Carin Waslo, M.P.H. (OHSU)
Presented at Oregon Academy of Ophthalmology 2018

Understanding Intracranial Hypertension
Emanuel Tanne,M.D. (IHRF, OHSU), et al.
Presented at Oregon Academy of Ophthalmology 2018

Rhinosinus Radiographic Findings in Chronic Intracranial Hypertension: A  New Neuroimaging  Diagnostic Finding?        
S. Vararad, M.D.,et al. 2016

Translaminar  Pressure Difference as a clinical Indicator for Papilledema in
IIH Patients
Emanuel Tanne, M.D. (IHRF, OHSU) et al. 2014

Weight Loss as a Predictor of Resolution of Symptoms in Subjects with Idiopathic Intracranial Hypertension
Zoe Wyse, OHSU M.P.H. degree thesis 2013

Incidence and Correlation of Failure for Ventriculopertoneal and Lumbo peritoneal Shunts in Patients with Idiopathic Intracranial Hypertension
Richard Martin, OHSU M.P.H. degree thesis 2011

IHRF Patient Conference 2011
Multiple Registry investigations
Presented at Nationwide Children’s Hospital 2011

Pediatric Intracranial Hypertension: Surgical Interventions
Emanuel Tanne, M.D. (IHRF, OHSU)  2009

Sinonasal Mucosal Thickening May Reflect Disease Activity in Idiopathic Intracranial Hypertension
Justin Dodge, M.D. (Walter Reed Medical Center), Bronwyn Hamilton, M.D.(OHSU) et al.
Presented at the National Radiology Conference 2010

IHRF Patient Conference 2008
Multiple Registry investigations
Presented at the University of Texas 2008

IHRF Patient Conference 2006
Multiple Registry investigations
Presented at Oregon Health & Sciences University 2006

Does the Choice of Primary Surgical Procedure Correlate with a Significant Difference in Total Number of Surgeries  Needed in Medical Failure Patients with IIH? Comparing Those Undergoing ONSD Vs CSF Shunting as Their Primary Surgery
Susan Benes, M.D. (Ohio State University), et al.
Presented at North American Neuro-Ophthalmology (NANOS) Meeting 2005

Findings at Autopsy in IIH Patients
Emanuel Tanne, M.D. (IHRF, OHSU), et al.
Presented at the 3rd Neural Hydrodynamics Symposium 2005

Other IH Registry Research Initiatives

  • Development of First IIH Organ and Tissue Donor Research Program with the National Disease Research Interchange (Nation Disease Research Interchange) 2013
  • Original Member Registry, Global Rare Disease Registry (GRDR)
    A Global Registry for all 7000 Rare Diseases, sponsored by National Institute of Health (NIH) 2011
  • Member, NASA Working Group on fluid shift hydrodynamics in astronauts

Recognition

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