History and Research Mission
At HA, we are dedicated to the advancement of promising research with the potential to promote the understanding, diagnosis, treatment and, ultimately, the prevention of hydrocephalus. Since the first National Institutes of Health (NIH)-sponsored workshop on hydrocephalus in 2005, in which HA played an instrumental role, the increase in research on hydrocephalus has been a cause for hope for the hydrocephalus community. Since HA launched its Research Initiative in 2009, the Association has directly funded both basic and clinical research which is advancing the knowledge base on hydrocephalus and is leading to improvements in diagnosis and treatment. HA remains committed to stimulating and funding research which improves the quality of life for people living with hydrocephalus, while encouraging more scientists – both junior and senior — to focus on this condition, so we may better understand, diagnose, treat, and eventually cure it.
The Research Initiative and The Role of NIH in Disease Research
Our Research Initiative is intended to stimulate innovative research such that scientists go on to apply to various programs at the National Institutes of Health for further grant funding. NIH funding is a game of numbers — numbers of applications, their quality and the NIH budget. NIH seeks to fund the best science by establishing a “payline” — an arbitrary cutoff line for ranked applications that they can afford to fund in a given cycle. Our goal at this early stage of our Research Initiative is to increase the number and quality of the hydrocephalus related applications being submitted to NIH by seed funding preliminary data that helps applicants create stronger grant applications.
Secondarily, we hope to make the federal government take responsibility for the health burden of hydrocephalus and help stimulate the hydrocephalus research ecosystem through funding opportunities. Total NIH funding for hydrocephalus research in 2011 was only $6.4M. By comparison, NIH funded $151M in Parkinson’s Disease research which has a similar prevalence in the population. That is 23 times more funding. To understand our efforts to advocate for more government involvement in hydrocephalus research, see our advocacy pages.
Our Grants and Partnerships
To see a list of our past and current awardees, see our list of HA Research Initiative Grantees
To get all the latest details on our clinical research partner, the Hydrocephalus Clinical Research Network, visit our partner website for the Hydrocephalus Clinical Research Network”
Research only benefits our constituents if it produces better outcomes – improved treatments, improved quality of life, better therapeutic interventions and, eventually, cures and prevention. These outcomes occur through a lengthy and careful process of research dissemination, adoption of evidence-based practice by practitioners, testing of new inventions through randomized control trials, approval of new technologies and therapies by the FDA, and circulation and distribution to patients with hydrocephalus.
The engine driving this process is career development, training, collaboration and the very critical step of public research funding. It is a very difficult funding environment for all investigators, especially young investigators, so we must take a long-term perspective. In the early phases of our Research Initiative, HA is measuring success based on career development and the number of research grants made by NIH. In the long term, the Association will follow all phases of these grants – HA’s grants as well as subsequent NIH grants — through to publication of research outcomes, and will track adoption of improved treatments and the approval of therapeutic interventions by the FDA. Ultimately, HA will measure quality of life of our constituents as the end goal of all research programs.
Early returns on HA’s Research Initiative show promise. Several of the Mentored Young Investigators have gone on to apply for NIH grants (both career development and research grants) and four additional grants being developed though not yet submitted. HA-funded research has resulted in 20 presentations at professional meetings, four publications in peer reviewed journals and an additional three manuscripts have been submitted for publication. Evidence produced and disseminated by HA’s research partners at HCRN has reduced post-surgical shunt infections by more than 35% across their institutions. We are encouraged to report that more than 20 medical institutions have requested this protocol to reduce shunt infections. If this protocol were adopted nationwide, we estimate that there would be 6000 fewer infections related to shunt surgeries, and a savings of $372 million, over a five year period alone.