Research Overview

Research by dedicated scientists and clinicians from a wide range of disciplines is expanding our knowledge of hydrocephalus, translating discoveries and insights into vital new treatments and clinical care practices for people living with hydrocephalus.

Our Mission & Strategy

The mission of our Research Program is to fund research that improves the quality of life for people living with hydrocephalus, and ultimately to find a cure. To accomplish this mission, the Board of Directors established three priority areas:

Stimulate the Research Ecosystem

Significant advancements in the care and treatment of hydrocephalus require a vibrant, multidisciplinary research community. To promote this community, HA developed the HA Network for Discovery Science (HANDS), a platform for both communication and collaboration among hydrocephalus basic and translational researchers with a focus on mentorship, innovation, and shared infrastructure. Through HANDS, HA also holds research conferences and workshops that are designed to promote collaboration and identify promising new opportunities.

Improve Clinical Outcomes and Quality of Life

Through our two clinical research networks and the HA Patient-Powered Interactive Engagement Registry (HAPPIER), HA is supporting high quality research that matters to our community now. The pediatric-focused Hydrocephalus Clinical Research Network (HCRN) and Adult HCRN (AHCRN) are focused on improving the lives of those living with hydrocephalus by optimizing clinical care and long term outcomes. HAPPIER is focused on learning from our community about what matters most and providing researchers with valuable data to pursue those avenues of research.

Advance the Study of Root Causes

Through HANDS we award research grants to individual investigators conducting innovative, breakthrough research on the causes and consequences of hydrocephalus. The goal is to identify and develop new interventions, treatments, and, ultimately, cures for the condition.

Jill Morris

The National Institute of Neurological Disorders and Stroke (NINDS) is committed to basic, translational, and clinical research in neuroscience and neurological disorders, including hydrocephalus research. The Hydrocephalus Association research program has built partnerships with NINDS and across the spectrum of research in a way that supports the development of new ideas, tools, and therapies designed to improve patient outcomes.

Dr. Jill Morris, Program Director
National Institute of Neurological Disorders and Stroke
National Institutes of Health

Connecting Basic, Translational, and Clinical Researchers

The Hydrocephalus Association Research Program is focused on advancing promising avenues of hydrocephalus research and building a committed and connected hydrocephalus research community. Through the support of three research networks and our patient-powered registry, HA has created a research ecosystem that improves the lives of those with hydrocephalus now, while identifying and testing new hypotheses and therapies. By connecting basic, translational, and clinical researchers, HA is accelerating hydrocephalus research and working to fulfill our mission.

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Research Networks and the Patient-Powered Registry

We support three networks and a patient-powered registry that accelerate high quality, high-impact hydrocephalus research.

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Hydrocephalus Clinical Research Network (HCRN)

A network of fourteen children’s hospitals that conduct clinical research on hydrocephalus.

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Adult Hydrocephalus Clinical Research Network (AHCRN)

A network of eight hospitals that conduct clinical research focused on adults with hydrocephalus.

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Hydrocephalus Association Network for Discovery Science (HANDS)

A platform for both communication and collaboration among hydrocephalus basic and translational researchers with a focus on mentorship, innovation, and shared infrastructure. Through HANDS we award research grants to individual investigators conducting innovative research and also hold research conferences and workshops that are designed to promote collaboration and identify promising new opportunities.

Happier

Hydrocephalus Association Patient-Powered Interactive Engagement Registry (HAPPIER)

HAPPIER, an online database created to bring the patient perspective to hydrocephalus research. HAPPIER will help accelerate hydrocephalus research by providing patient-generated and patient-centered data to the research community.