• 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 PIs at the AANS/CNS Pediatric Section Meeting in Florida

    HCRN was very involved in the recent Section meeting. There were four presentations by HCRN Investigators:

    1. Kulkarni, Abhaya: Endoscopic Third Ventriculostomy (ETV) in Children: Prospective, Multicenter Results from the Hydrocephalus Clinical Research Network (HCRN).
    2. Kestle, John: Results of a New HCRN Shunt Infection Protocol.
    3. Riva-Cambrin, Jay: Classifying Hydrocephalus Etiology in Children: A Hydrocephalus Clinical Research Network (HCRN) Inter-rater Reliability Study.
    4. Wellons, John: Shunting Outcomes in Post-Hemorrhagic Hydrocephalus (SOPHH): Evaluating Compliance to a Standardized Protocol and Surgeon Preference on Intervention Weight.

    In addition, Dr. Jack Walker was honored with the 2014 Franc D. Ingraham Award for Distinguished Service and Achievement. This is a lifetime achievement award, which isn’t given out every year; it is only done when a deserving person is nominated.

    Dr. Wellons and Dr. Kestle also gave talks that weren’t specifically on HCRN, but were closely tied to HCRN. They were directed at methods of multicenter collaboration in research.

     

    HCRN Fall Meeting in Park City

    HCRN had their fall meeting in Park City, Utah, October 23-24. There was a lot of excitement around the recent PCORI grant and the new study, which is a randomized trial comparing shunt insertion at the front or the back of the head. This is the first randomized trial conducted in the Network and there were many details to go over, so that everyone is ready to start the study in the New Year.

    The other main focus of the meeting was on ETV-CPC. An ongoing study and the possibility of doing a randomized trial were discussed. We also focused on data quality and getting our data entered in a timely fashion, as cleanly as possible. Our meetings always generate lots of new ideas, work and excitement.  The next meeting is scheduled in Toronto in April.