Research Blog

Adult Hydrocephalus Clinical Research Network (AHCRN) Update

Last week the Adult Hydrocephalus Clinical Research Network (AHCRN) met in Salt Lake City, Utah to discuss the progress and next steps for the network.

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Hydrocephalus Action Network

Tax Overhaul may Affect Charitable Giving and Non-Profits

Congressional efforts to overhaul the tax code could have major implications for charitable giving and non-profit budgets and could lead to reductions in research, advocacy, outreach, and other services.

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Interview with Olivia Bell, Cognitive Therapist – Part 2

This part of the interview touches on neuropsychology, debunking some misunderstandings about cognitive therapy (CT), some advice Olivia had for NPH patients and spreading the word about CT.

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Hydrocephalus Action Network

A Possible Cut in Hydrocephalus Research Funding from Capitol Hill

Congress is currently debating a bill that could have major implications for hydrocephalus research through the Department of Defense CDMRP program.

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Preliminary results from the International Infant Hydrocephalus Study

There are two common treatment options available for infants that suffer from Aqueductal stenosis: implantation of a shunt or an endoscopic third ventriculostomy

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Reflections From “Boozle Bear Sew-a-Thon” Event Participant

The Boozle Bears were fun to help make, and I hope they help children understand their condition, as well as raise money for the research I will one day be conducting!

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The Vision to End Hydrocephalus after a Brain Bleed

The Hydrocephalus Association’s annual Vision Dinner highlights the advances in research that aims to prevent or minimize the development of hydrocephalus after a brain bleed.

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From Patient to Progress: New insights into preventing shunt blockages

While shunt implantation is a typical treatment option for people with hydrocephalus, there have been surprisingly few advances to decrease shunt failure rates since the 1950s

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New Theories in Posthemorrhagic Hydrocephalus

A recent study expands these results to posthemorrhagic hydrocephalus in premature infants. Please take a moment to read more about this important research.

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Interview with Olivia Bell, Cognitive Therapist – Part 1

This is the first part of Trish’s interview with cognitive therapist Olivia Bell. It covers who benefits from CT, how to find a therapist, and how to get the most out of the therapy appointments. 

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New Theories in Fetal-Onset Hydrocephalus

Current research suggests that a cascade of events involving cell junctions, the VZ, and the SVZ may be the cause of fetal-onset hydrocephalus and its accompanying neurological disorders.

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Research 101: Brain Development

We are continuing our series on the role of cell junctions and the ventricular zone in the development of hydrocephalus.

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Meet the HCRN Clinical Research Coordinators

The HCRN is fortunate to have a team of hard working, experienced coordinators who are responsible for study start up, running the study, and wrapping things up once a study ends.

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How I decided to have shunt surgery

Trish was diagnosed with NPH in 2015 and had shunt surgery then. Thanks to the surgery and several kinds of therapy, Trish is now back to doing what she loves, including a killer step aerobics class at her gym and singing with her husband in a community chorus

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Doctor holding a brain shunt

The Challenge of Diagnosing Shunt Dysfunction

Researchers aim to improve the way that physicians identify problems with a shunt implant

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A Look at New Shunt Technology

Biomedical engineers test a sensor that could help predict when a shunt revision is needed.

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New Tool Detects Pressure Non-invasively

Non-invasive tool may be instrumental in evaluating elevated ICP – a symptom of hydrocephalus and shunt malfunction.

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New Insights into Normal Pressure Hydrocephalus

A recently published study attempts to shed light on the long term outcomes of untreated iNPH by examining mortality rates, risk of dementia, and symptom progression in individuals with ventricular enlargement.

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New Study Seeks to Improve Outcomes After a Brain Bleed

Germinal matrix hemorrhage (GMH) is a brain bleed that occurs in approximately 3.5 per 1000 live births and remains a leading cause of mortality and lifelong morbidity in premature infants.

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The Importance of Environmental Enrichment

Learn more about a recent study that suggests stimulating environments can improve cognitive outcomes for children living with hydrocephalus.

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Cognitive Therapy for NPH Patients

If you have Normal Pressure Hydrocephalus (NPH) you might find Cognitive Therapy useful. Trish Bogucki explains what it consists of and shares some tips for others who might be in the same boat she was in.

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2017 Every Member Campaign

Your membership support of HA helps newly diagnosed families across the nation who are seeking our support and encouragement.
Read how your membership gift is making an impact!

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The Hydrocephalus Association wants to THANK YOU!

By filling out our online surveys, participating in the clinical research networks, and making donations, we are moving hydrocephalus research forward!

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Over 500 Adult Hydrocephalus Patients Enrolled in Registry

HA is proud to fund the AHCRN as they move research from bench to bedside to find new treatments, preventions and cures for adults living with hydrocephalus and NPH.

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The Challenges of Transitioning to Adult Care

HA has long been aware of inequality in care for children and adults with hydrocephalus, and we are taking steps to bridge the gap.

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2016 Innovator Award Announcement

The Hydrocephalus Association is pleased to announce the funding of three hydrocephalus researchers through the HA Network for Discovery Science (HANDS), Innovator Award.

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Genetic Mutations and their Role in Congenital Hydrocephalus

Hydrocephalus has been shown to have multiple causes, including numerous genetic origins. Dr. Jenna Koschnitzky explores genetic mutations in a three blog series.

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Student Spotlight: Jamie Wright Advocates For Hydrocephalus Awareness

Imagine having a neurological condition that most people have never heard of. Jamie Wright is on a mission to educate others about hydrocephalus.

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Staff of the Hydrocephalus Association

2016 Year-In-Review

As we close out yet another banner year, we are grateful for all that we have been able to achieve through the support of our caring community.

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So Many Reasons To Be Grateful

Olivia Maccoux shares her story and leads this year’s holiday drive to support the critical research work of the Hydrocephalus Association.

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NIH Nonprofit Forum 2016

Nonprofit and Government Leaders Unite Around Medical Research

Dr. Jenna Koschnitzky, Hydrocephalus Association Director of Research Programs, speaks at the 2016 NIH NINDS Nonprofit Forum.

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Premature Baby Posthemorragic hydrocephalus

HA Convenes the First International Workshop on Posthemorrhagic Hydrocephalus

Workshop on Posthemorrhagic Hydrocephalus (PHH) proves the potential for researchers to alter the course of the development of hydrocephalus and its long-term outcomes.

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Hydrocephalus Clinical Research Network

Hydrocephalus Clinical Research Network Adds Five New Centers

The Hydrocephalus Clinical Research Network (HCRN) adds five new research institutes to the network.

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Cerebral Palsy Awareness

Cerebral Palsy Benefits from Hydrocephalus Research

On National Cerebral Palsy Awareness Day, the Hydrocephalus Association is proud to support the Cerebral Palsy Research Network.

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National Hydrocephalus Conference

Conference Registration is OPEN!

Registration for our 14th National Conference on Hydrocephalus is OPEN! Join us in Minneapolis, Minnesota, June 16 – 19, 2016.

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Doctor holding a brain shunt

ISHCSF Highlights HCRN Studies on Shunt Failure and Infection

ISHCSF newsletter highlights Hydrocephalus Clinical Research Network (HCRN) studies around hydrocephalus shunt infection rates and risk factors.

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Lance Lee, PhD, Hydrocephalus Association Innovator Awardee

Announcing the 2015 Innovator Award Grantees

2015 Awardees focused on research to better understand why hydrocephalus develops and to identify therapies to prevent or reverse hydrocephalus.

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Hydrocephalus Association Resident’s Prize Award

One way the Hydrocephalus Association promotes research and leadership in hydrocephalus is through our annual Resident’s Prize. This prize is awarded each year to the most promising hydrocephalus-related research paper presented by a neurosurgical resident at the Pediatric Section meeting of the American Association of Neurological Surgeons/Congress of Neurological Surgeons (AANS/CNS). The prize is designed […]

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Hydrocephalus Vision Dinner Craig and Vicki Brown

Vision Dinner Aims to Accelerate Hydrocephalus Research

The Third Annual Vision Dinner successfully raised $500K to launch the Hydrocephalus Association Network for Discovery Science (HANDS).

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Adult Hydrocephalus Clinical Research Network

Next Steps for the Adult Hydrocephalus Clinical Research Network

The Core Data Project of the Adult Hydrocephalus Clinical Research Network (AHCRN) has enrolled nearly 200 patients since in late 2014.

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