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.
Improve Clinical Outcomes and Quality of Life
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.
We Are Building Success
The Hydrocephalus Association is focused on funding high-quality, high-impact research and building the hydrocephalus research community. Our impact can be seen far and wide throughout the hydrocephalus research field.
HA supports high quality research, since 2009 there have been:
Grants Awarded
Research Networks Supported
Hydrocephalus Patient-Powered Registry Developed
Research Workshops Sponsored
Biobanks Supported
“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
From the HA funded Grantees and Clinical Networks there have been:
Additional Grants Secured
Reduction in Shunt Infections
New Patents for a Drug Target Approved
Peer-Reviewed Studies Published
Preclinical Drug Therapies Tested
Investigational New Drug Application Submitted to the FDA
Research Priorities
With insights from nearly 1,500 voices—patients, families, scientists, and physicians—our study, conducted using the James Lind Alliance methodology, has shaped the Top 20 Community Research Priorities, now proudly published in the Journal of Neurosurgery.
Research Milestones
The Hydrocephalus Association officially launched the Research Initiative in 2009, following years of planning and groundwork, paving the way for transformative progress—discover its origins and the many impactful activities that have shaped its journey since.
Stay Informed: Research News & Insights
Take a look at our research blogs! The blogs cover topics from HA’s current research activities and new studies that have been published to educating yourself on how to evaluate relevant research and stay informed about groundbreaking developments.