Research Milestones

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    HA officially started the Research Initiative in 2009 but work on its development began long before. Learn about how the initiative started and the significant activities to advance hydrocephalus research since then.


    First National Institutes of Health (NIH) sponsored workshop on hydrocephalus, Hydrocephalus, Myths, New Facts, Clear Directions, initiated by and presented with significant input from HA. See our Conferences & Workshops


    House of Representatives Congressional Resolution on Hydrocephalus is proposed which expresses the need for research into this chronic neurological condition.

    “Long-term Outcomes in Patients with Treated Hydrocephalus” is published in the Journal of Neurosurgery (Pediatrics). Written by Nalin Gupta, MD, et. al., this article used information and statistics from the Hydrocephalus Association’s Database Registry.

    “Priorities for hydrocephalus research: report from a National Institutes of Health–sponsored workshop” is written by Jack Walker, M.D., Michael Williams, MD, and Pat McAllister, PhD, members of our MAB, and published in the Journal of Neurosurgery (Vol. 107 (5)).


    ICD-9 Code for Normal Pressure Hydrocephalus issued by International Classification of Disease – Centers for Medicare and Medicaid Services through the efforts of HA and others. ICD Codes are published by the World Health Organization (WHO) and are used to guide international comparability on the statistics collected to classify health disorders.

    Twenty months after our National Advocacy Day, both houses of Congress pass a resolution calling for more NIH support for hydrocephalus research.


    The Hydrocephalus Research Initiative is launched, adding the funding and support of research to HA’s mission. $600,000 is raised towards the effort.

    Mentored Young Investigator (MYI) program is started, with 5 awards made to new researchers interested in hydrocephalus. See our Past Grantees & Programs


    Second round of the Mentored Young Investigator grants are awarded. See our Past Grantees & Programs


    A Reason for Hope, a five-year research campaign to focus our efforts on high-yield research strategies that will develop ways to treat, prevent and cure hydrocephalus, is launched.

    $400,000 in Discovery Science Award grants on cerebrospinal fluid (CSF) dynamics are awarded. See our Past Grantees & Programs

    HA Chairman Paul Gross is appointed to the NIH National Institutes of Neurological Disorders (NINDS) Advisory Council.


    HA published the 2012-2014 Research Report.

    The second National Advocacy Day, Climbing Capitol Hill for a Cure, in Washington, DC is held.
    HA formally partners with the Hydrocephalus Clinical Research Network (, a collaboration of multiple research institutions working to dramatically improve the lives of children suffering from hydrocephalus. [link to The Clinical Networks]

    “Hydrocephalus” is included as a category in the NIH RePORTER, making hydrocephalus funding dollars by the government transparent to the public.

    The HA Research Conference, Opportunities in Hydrocephalus Research: Pathways to Better Outcomes, co-sponsored by NIH and Seattle Children’s Hospital, is held in Seattle, WA. See our Conferences & Workshops
    A task force to develop the Adult Hydrocephalus Clinical Research Network ( is formed. See our Clinical Networks

    Chairman Paul Gross leads the Trans-NIH Hydrocephalus Working Group Meeting discussing the NIH level of research support.


    HA partners with the Rudi Schulte Research Institute (RSRI) to award a $1M in Discovery Science Award Grants See our Past Grantees & Programs

    HCRN expands from 7 to 9 Hospitals in the US and Canada. See our Clinical Networks


    HA sponsors the Biomarkers in Hydrocephalus Workshop, St. Louis, MO. [link to Conferences & Workshops] The Patient-Centered Outcomes Research Institute (PCORI) PCORI Awards $2.5M to HCRN & HA to conduct the Shunt Entry Site Trial. Learn About Ongoing Studies  

    NIH holds the Midbrain/Hindbrain Malformations and Hydrocephalus Workshop in Bethesda, MD. [link to Conferences & Workshops]

    Through HA’s advocacy efforts, hydrocephalus is added to a list of eligible conditions for the Department of Defense (DoD), Congressionally Directed Medical Research Program (CDMRP), opening up almost $250M in additional funding to hydrocephalus researchers.

    AHCRN launches the Core Data Project and begins enrolling patients.

    The HA Network for Discovery Science (HANDS) is launched. HANDS brings together basic, translational, and clinical researchers together in order to accelerate the pace of hydrocephalus research and development of new therapies.


    HA publishes the 2015-2017 Research Report.

    HANDS adds a cerebrospinal fluid (CSF) biobank supported and run through Washington University in St. Louis

    PCORI awards $50K to HA for Translation to Transform Project. The project brought together the hydrocephalus community with basic and clinical researchers in order to inform ongoing research efforts. See our Conferences & Workshops

    HA runs the first Innovator Award grant cycle and awards seven grants. [link to Our Past Grantees & Programs]


    HCRN expands from 9 to 14 sites. See our Clinical Networks

    HA holds the Translation to Transform Workshop in Minneapolis, MN. See our Conferences & Workshops
    HA hold the HANDS Posthemorrhagic Hydrocephalus Workshop in Bethesda, MD. See our Conferences & Workshops

    “An update on research priorities in hydrocephalus: overview of the third National Institutes of Health–sponsored symposium Opportunities for Hydrocephalus Research: Pathways to Better Outcomes” is written by Pat McAllister, PhD et. al., and published in the Journal of Neurosurgery.

    HA funds three Innovator Awards focused on Posthemorrhagic Hydrocephalus (PHH). See our Past Grantees & Programs


    The DoD awards $4.1M to two HA-funded researchers through the CDMRP.

    The NIH and Australia’s equivalent, NHMRC, award over $2.1M to two HA-funded researchers.

    The AHCRN expands from 5 to 8 sites, including the first European site.

    HA funds 8 Innovator Awards focused on PHH and Postinfectious Hydrocephalus (PIH). See our Past Grantees & Programs

    HA publishes Translation to Transform Project white paper. See our Conferences & Workshops

    AHCRN begins an NPH randomized controlled trial focused on shunt effectiveness.

    HA funds the first ever ‘Omics’ Biobank for PHH.


    The DoD awards $2.3M to one HA-funded researcher through the CDMRP.

    The NIH awards $1.8M to an HA-funded researcher and a prestigious $8.1 million Transformative Research Award to an HA-funded co-investigator. The project is focused on predicting infectious disease outbreaks to provide real-time point of care treatments to patients and could lead to a dramatic decreases in the rates of PIH in developing countries.

    HA launches HAPPIER (HA Patient-Powered Interactive Engagement Registry), the first ever hydrocephalus patient-powered longitudinal registry at the National Conference on Hydrocephalus. Join Now!

    HA helps coordinate the NIH Hydrocephalus Workshop: State-of-the-Science and Future Directions. See our Conferences & Workshops