Pursuing a Cure: Research Initiative

Research Initiative

Our Mission

The mission of the Hydrocephalus Association’s Research Initiative is to fund research that improves the quality of life for people living with hydrocephalus and, ultimately, to find a cure.

Our Strategy

In 2009, the HA board of directors defined our Research Initiative. In 2011, the strategic plan was set which established three priorities to allocate the  research budget. The programs HA organizes and executes are all meant to address directly our established research priority areas:

  •  Stimulate the Research Ecosystem
  • Improve Clinical Outcomes and Quality of Life
  • Advance the Study of Root Causes

Click here for more details on our Research Priority Areas.

Our Success

To stimulate hydrocephalus research and obtain clear guidance on where hydrocephalus research should be moving, HA has sponsored 3 hydrocephalus workshops and 1 conference.  In our 2012 Seattle conference, HA brought together experts from many fields to collectively identify priority areas in hydrocephalus research.

Click here for more details on our Research Conferences and Workshops.

Since the start of our Research Initiative in 2009, HA has allocated its research funding into 3 areas:

  • Career Development: HA has completed 2 grant cycles supporting a total of 7 young investigators conducting both basic and clinical research studies.
  • Clinical Research: HA has partnered with and is funding research for both the Hydrocephalus Clinical Research Network (HCRN) and Adult Hydrocephalus Clinical Research Network (AHCRN). These groups leverage resources across multiple hospitals in order to produce high quality clinical research studies focused on improving the lives of patients today.
  • Basic Research: Research Focus Area Grants (RFAs) are aimed at tackling specific knowledge gaps in the root causes of hydrocephalus. HA has run 2 grant cycles, funding 3 grants focused on understanding Cerebral Spinal Fluid (CSF) dynamics in hydrocephalus. In addition, HA ran a similar grant cycle for the Rudi Schulte Research Institute.

Click here for more details on our Research Programs.

The need for more…

HA is committed to funding high quality, high impact research as prioritized in our Research Initiative. Our early goal is to fund preliminary data collection that helps investigators create stronger National Institutes of Health (NIH) grant applications. The competition for NIH grants, however, continues to increase as the number of applications rise without matching increases in NIH funding. It is therefore essential to maintain and advance active, innovative research programs in order to remain competitive for NIH funding.

Hydrocephalus research funding is far behind other conditions with similar prevalence numbers. Total NIH funding for hydrocephalus research in 2011 was only $6.4M; by comparison, NIH funded $151M in Parkinson’s Disease research. In 2012 and 2013, that number stayed steady at $6.8M and $6.5M, respectively. In the current funding environment, maintaining our current funding level is good, and many of the funded investigators have ties with HA. Clearly, however, hydrocephalus research needs to become a research priority for more laboratories, clinics, and the NIH.

Click here for more detail on the National Institutes of Health.

 

1 Comments for : Pursuing a Cure: Research Initiative
    • rachel campbell
    • August 31, 2016
    Reply

    Hi there,

    Do you handle any research around L1Cam syndrome since it’s a genetic mutation that causes hydrocephalus during pregnancy? Or any research around prenatal hydrocephalus? As a carrier of this rare syndrome I’m interested in supporting organizations around prenatal hydrocephalus.

Leave a Comment

Change this in Theme Options
Change this in Theme Options