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.
2005
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. The workshop brought together researchers, scientists, clinicians, parents people with hydrocephalus, and advocates to challenge the existing dogma and mythology surrounding hydrocephalus. It also identified critical gaps in research and clinical treatment. See our Conferences & Workshops
2007
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: a report from a National Institutes of Health-sponsored workshop” is written by Jack Walker, M.D., Michael Williams, M.D., and Pat McAllister, Ph.D., members of our MAB, and published in the Journal of Neurosurgery.
2009
The Board of Directors officially expands HA's mission to include the funding and support of research, formalizing our Research Program and prior research initiatives. $600,000 is raised towards the effort.
The Mentored Young Investigator (MYI) program is started, with 5 awards made to new researchers interested in hydrocephalus. The MYI program intends to stimulate innovative research such that scientists go on to apply to various programs at the NIH for further grant funding, thereby keeping research on hydrocephalus active and ongoing.
2010
The second round of the Mentored Young Investigator grants are awarded. Two previous MYI grantees submit applications for continued funding of hydrocephalus research to NIH.
2011
We launch 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.
HA awards $400,000 in Discovery Science Award grants. The long-term goal of these grants is to create therapeutic interventions – such as a pill – that could control intracranial pressure.
HA Chairman Paul Gross is appointed to the NIH National Institutes of Neurological Disorders (NINDS) Advisory Council. The Advisory Council advises the Institute on policy and procedures affecting research programs and provides a secondary review for all grant and cooperative agreement applications considered by the Institute for funding.
2012
HA published the 2012-2014 Research Report.
HA formally partners with the Hydrocephalus Clinical Research Network (HCRN), a collaboration of multiple research institutions working to dramatically improve the lives of children suffering from hydrocephalus.
“Hydrocephalus” is included as a category in the NIH RePORTER, making hydrocephalus funding dollars by the government transparent to the public.
Our Research Conference, Opportunities in Hydrocephalus Research: Pathways to Better Outcomes, co-sponsored by NIH and Seattle Children’s Hospital is held in Seattle, WA. The conference brings together the leading medical and scientific professionals involved in hydrocephalus treatment and research.
A task force to develop the Adult Hydrocephalus Clinical Research Network (AHCRN) is formed. The Board votes to provide a seed grant of up to $50,000 to help advance the project and develop the resources for the research data collection effort through the use of a data coordinating center.
HA Chairman Paul Gross leads the Trans-NIH Hydrocephalus Working Group Meeting, discussing the NIH level of research support.
2013
HA partners with the Rudi Schulte Research Institute (RSRI) to award a $1M in Discovery Science Award Grants.
HCRN expands from 7 to 9 Hospitals in the US and Canada.
2014
HA sponsors the Biomarkers in Hydrocephalus Workshop in St. Louis, MO.
The Patient-Centered Outcomes Research Institute (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.
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.
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.
In November 2014, Pediatric hydrocephalus: systematic literature review and evidence-based guidelines, is published in a supplemental issue of the Journal of Neurosurgery: Pediatrics. Nineteen treatment recommendations are given along with the evidence-based strength of each recommendation.
The Adult Hydrocephalus Clinical Research Network (AHCRN) launches the Core Data Project and enrolls patients at five participating sites located throughout the United States and Canada.
2015
Our first ever Innovator Awards are launched for Investigators in Hydrocephalus Therapeutics Research. Awards are given to five researchers.
HA’s third annual Vision Dinner exceeds its goal to raise $500k to support the launch of HANDS. HANDS adds a cerebrospinal fluid (CSF) biobank supported and run through Washington University in St. Louis
HA nominates two individuals to serve as the first hydrocephalus peer reviewers for research grants submitted to the Department of Defense’s Congressional Directed Medical Research Programs (CDMRP) Peer Reviewed Medical Research Program (PRMRP) portfolio. Annually HA continues to add patient reviewers to the panel to assure the patient voice is at the table.
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.
2016
HCRN expands from 9 to 14 sites.
HA holds the Translation to Transform Workshop in Minneapolis, MN.
“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.
Our three-year, $3-million campaign is launched to tackle the challenge of posthemorrhagic hydrocephalus (PHH), the most common and insidious cause of hydrocephalus in children. HA funds three Innovator Awards focused on PHH and HANDS held a groundbreaking research workshop focused on PHH.
Two research groups are awarded grants through the Department of Defense (DoD) Congressionally Directed Medical Research Program (CDMRP) to continue their HA-funded projects. Combined, these awards will total over $2.4 million after an initial investment of only $160,000 from HA.
2017
The AHCRN expands from 5 to 8 sites, including the first European site, and begin an NPH randomized controlled trial focused on shunt effectiveness.
The DoD awards $4.1M to two HA-funded researchers through the CDMRP.
HA supports two early-stage drug therapies and published six papers featuring HA-supported research. HA funds 8 Innovator Awards focused on PHH and Postinfectious Hydrocephalus (PIH), including HA's first ever ‘Omics’ Biobank for PHH.
HA’s first-ever Transition Summit brings together adult and pediatric neurosurgeons, neurologists, pediatricians and other medical professionals, health system administrators, patients, and parents to discuss solutions to improve transitional and longitudinal care for adolescents and young adults with hydrocephalus.
Our Roadmap to a Cure campaign is launched, a bold effort to invest $20 million by 2020 to accelerate hydrocephalus research, expand patient support services and raise public awareness.
HA publishes the 2015-2017 Research Report.
2018
HA launches the first Hydrocephalus patient registry in the United States. The HA Patient Powered Interactive Engagement (HAPPIER) is an online database collecting the experiences of people living with hydrocephalus in order to identify hydrocephalus research topics and to accelerate hydrocephalus research.
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.
A paper summarizing the findings from HA’s first-ever Transition Summit is published in the prestigious Journal of Neurosurgery highlighting the challenges faced when transitioning from pediatric to adult care.
HA helps coordinate the NIH Hydrocephalus Workshop: State-of-the-Science and Future Directions.
2019
2019 marks 10 years since the launch of our Research Program. This makes HA the largest private funder of hydrocephalus research in the country, investing over $11M in research and awarding 40 grants to brilliant scientists.
In November, scientists from across the U.S., and five countries, convene at Washington University in St. Louis for our Driving Common Pathways Workshop. The workshop focuses on posthemorrhagic hydrocephalus (PHH) and the overlap between the mechanisms implicated in PHH and other forms of hydrocephalus.
We launch two new Ask the Expert video series focusing on adults and on Normal Pressure Hydrocephalus with Drs. Mark Luciano and Abhay Moghekar.
2020
We complete the first phase of our Community Research Priority Assessment. The goal of the assessment is to develop a top 20 list of research priorities that are driven by the needs of our community.
Four researchers receive major follow-up funding from the National Institutes of Health (NIH) for their HA-funded projects.
We host the inaugural meeting of the new Scientific Advisory Board (SAB). The SAB will help shape HA’s research agenda, providing scientific leadership and guidance, in the years to come.
The HA Medical Advisory Board provides information and guidance on the Covid-19 pandemic as it relates to individuals living with hydrocephalus. This includes regular updates on our website as well as a special two-part virtual Q&A event to address concerns.
HA publishes the 2018-2020 Research Report.
2021
AHCRN is awarded a $14M National Institutes of Health (NIH) grant to study shunt treatment for normal pressure hydrocephalus (NPH), called The Placebo-Controlled Efficacy in Idiopathic Normal Pressure Hydrocephalus (iNPH) Shunting (PENS) Trial.
This is the first year for the Ralph Kistler Research Internship. The internship is for undergraduate college students who are interested in the sciences, public health and non-profit operations.
Hydrocephalus was again included as an eligible condition under the Fiscal Year 2022 Defense Appropriations Act. To date, scientists have received $14.4M in funding from the CDMRP.
2022
An unprecedented 10 Innovator Awards went to scientists for their innovative research.
HA hosted an impactful research workshop in Houston, TX, with support from the Rudi Schulte Research Institute. The focus of the meeting is Improving Cognitive and Psychological Outcomes in Hydrocephalus, and we honored the legacy of Dr. Michael Pollay, an incredible physician and scientist with 99 publications to his credit.
After two years of collating survey responses from almost 1,500 representatives of the hydrocephalus community, our new Top 20 Community Research Priorities are published in the Journal of Neurosurgery.
2023
Seven researchers are awarded the 2023 Innovator Award, with a focus on advancing projects aligned with the new Hydrocephalus Community Research Priorities.
HA-funded researchers receive nearly $3 million in funding from the National Institutes of Health (NIH), over $500,000 in funding from the Department of Defense (DoD), and $325,000 in funding from the Rudi Schulte Research Institute (RSRI).
HA hosts a research workshop focused on Developing Non-Invasive Hydrocephalus Therapies: Molecular and Cellular Targets in Dallas, TX.
HA publishes the 2021-2023 Research Report.
2024
HA launches four new grant programs: the Accelerator Award, the Epidemiology Challenge Award, the Neuropsychology and Cognition Award, and the Engineering in Hydrocephalus Prize. Combined with the Innovator Award and NextGen Travel Award, HA grants an unprecedented 27 awards in total in 2024.
HA hosts two research workshops. The first workshop in early spring, Developing Non-Invasive Hydrocephalus Therapies: Advancing Towards Clinical Trials, was held in Cincinnati, OH with the support of the Cincinnati Children's Hospital and continued the momentum from the 2023 research workshop. The second workshop, held in the fall in Falls Church, VA with support from the Rudi Schulte Research Institute, focused on building research priorities for idiopathic Normal Pressure Hydrocephalus.
Three past HA-grantees are awarded nearly $7 million in funding from the NIH.
HA's total infusion into hydrocephalus research, including both HA's investment and follow-on funding, surpasses $100 million.