• Hydrocephalus Clinical Research Network

    The mission of the Hydrocephalus Clinical Research Network is to dramatically improve the lives of kids suffering from hydrocephalus by conducting important and field-changing, multi-center clinical research.

    Each year an estimated 10,000 people in the US and Canada will be diagnosed with hydrocephalus, a life-threatening and debilitating condition for which there is no cure.

    Many of these people are children. Left untreated, hydrocephalus can cause permanent brain damage, disability, and death. Most experts agree hydrocephalus occurs when the normal flow of cerebrospinal fluid (CSF), a natural fluid produced inside the brain, somehow gets restricted. This restriction results in increased pressure on a patient’s brain tissue.

  • The HCRN Blog

    HCRN PI’s offer point and counterpoint of shunting and ETV/CPC

    HCRN Chairman John Kestle and HCRN investigator Jay Riva-Cambrin were published in AANS Neurosurgeon this month in counterbalancing articles about changes in treatment of hydrocephalus and the impact of new procedures going forward. Dr. Riva-Cambrin discusses his observations in nuances of the treatment of hydrocephalus since he was trained as a neurosurgeon in the late 1990s. He highlights the re-emergence of the endoscopic third ventriculostomy with the addition of choroid plexus coagulation and the potential for changing the default treatment of hydrocephalus with a shunt. Dr. Kestle’s article provides the counterpoint that despite these innovations, shunts are the “workhorse” of hydrocephalus treatment and we must continue to improve the outcomes for patients treated with a shunt. Both of these articles make for interesting reading about the evolution of hydrocephalus treatment.

    Innovative Analysis of Publicly-Funded Hydrocephalus Research

    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 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 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.

    Read the complete article here courtesy of the Journal of Neurosurgery: Pediatrics, February 2014.