A review of the history of public funding of hydrocephalus research funded by the National Institutes of Health (NIH) was recently published in the Journal of Neurosurgery: Pediatrics. The review is the result of the collaboration between Hydrocephalus Clinical Research Network (HCRN) Co-Founders Paul Gross and Dr. John Kestle with the Hydrocephalus Association (HA). It was found that over the 10-year period from 2002 to 2011, NIH funded $54M of which nearly half ($25M) was spent on the Management of Myelomeningocele Study (MOMS) randomized control trial. The next largest investment was nearly $10M spent on device development. On basic science research, $9 million was spent.
Grants were analyzed over time and many interesting trends were found. In the first five years, National Institute of Child Health and Development (NICHD) was the largest funder of hydrocephalus research (largely driven by the MOMS trial) but more recently the National Institute of Neurological Disorders and Stroke (NINDS) has taken the lead in funding hydrocephalus research. The majority of that funding has been focused on device development which was stimulated by the sole Program Announcement (PA-12-189), [a PA is an indicator of NIH interest without set aside funding], on hydrocephalus for improving shunts in 2009. This PA is for Small Business Innovation Research (SBIR) grants that have a federal mandate to be 2.8% of the NIH budget (moving to 3.2% over the coming years).
NIH has funded an average of five new hydrocephalus grants per year during the last five years of the analysis. With the grant mix weighted toward SBIRs, it is estimated that there are only 20 grant applications per year! So the biggest conclusions from the analysis are:
1. Hydrocephalus needs more researchers conducting high impact, innovative research.
2. Alternative funding is very important given the challenging public funding environment. Private funding opportunities – such as HA’s Research Initiative – are very important to advancing research and developing preliminary data to support applications for public funding.