There are two critical elements to increasing the amount of money that NIH invests in hydrocephalus research. First, the program officers that direct portfolios of scientific research grants need to become more educated about hydrocephalus, its impact and the complexity of the condition. Second, more grant requests need to be submitted to the various institutes to be reviewed, scored and potentially funded.
The NIH Workshop spawned many collaborative efforts that the Hydrocephalus Association played a role in supporting. The Hydrocephalus Clinical Research Network (HCRN) was founded by participants in the workshop and HA played an advisory role in the startup and growth of that effort. HCRN went on to secure NIH funding in the fall of 2009. In addition, NIH issued a program announcement targeted at improving shunt technology in June 2009 which has led to an increase in applications to NIH for grants in this area.
While the growth in federal investments in hydrocephalus research is good, the absolute dollar amount is far too small given the number of people affected. We must continue to educate NIH about the need for greater understanding and more research in hydrocephalus. And we must continue to stimulate the hydrocephalus research ecosystem by funding young scientists and innovative ideas so those researchers go on to submit grant requests to NIH.
Another outgrowth of the 2005 workshop was the formation of the trans-NIH working group on hydrocephalus. NIH forms similar teams when it begins to understand the nature of a complex disease or condition. Leadership of the Hydrocephalus Association meets with the Trans NIH working group on hydrocephalus every six months to discuss the research portfolios of the various institutes represented and to share HA’s plans and priorities for investing in hydrocephalus research. These meetings have been critical to tuning HA’s investment strategy for research and NIH’s receptivity to grants from the hydrocephalus research community.
National Advisory Council for Neurological Disorders and Stroke
In August 2011, HA Chairman Paul Gross was appointed to a four year term for the Advisory Council of the National Institute of Neurological Disorders and Stroke (NINDS). NINDS, a large funder of brain research of the National Institutes of Health, is the nation’s primary supporter of basic, translational and clinical research on the brain and nervous system. Its 18-member Council, composed of physicians, scientists and representatives of the public, meets three times a year to review applications from scientists seeking government grants to support biomedical research on disorders of the brain and nervous system. Members also advise the Institute on research program planning and priorities.
“In just a few years, Mr. Gross has done a remarkable job of engaging engineers, scientists and clinicians in plans to develop research that will lead to better treatment for people with hydrocephalus,” said Story Landis, Ph.D., Director of the National Institute of Neurological Disorders and Stroke. “I am delighted that he will be a member of the NINDS Advisory Council and look forward to his participation.”