• 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 in Africa

    At the last HCRN meeting (November 2012), we discussed ETV/CPC (Endoscopic third ventriculostomy with choroid plexus coagulation). This procedure was pioneered by Dr. Ben Warf (Boston Children’s Hospital) during his time in Uganda and he was a guest at the November HCRN meeting. He reviewed the technique and his data and we discussed the possibility of doing an HCRN study on this procedure. We felt that the first important step in that direction was for some HCRN members to gain additional experience with the technique. Dr. Warf kindly offered to train some HCRN investigators in Uganda. He makes periodic trips there to treat children with hydrocephalus at the Cure Children’s Hospital of Uganda. This month, Dr. Riva-Cambrin from the Salt Lake City HCRN center, Dr. Whitehead from the Texas HCRN center and Dr. Rozzelle from the Birmingham, Alabama HCRN center are in Uganda working with Dr. Warf. Other investigators will be doing the same later this spring. We hope this experience will allow us to study this innovative procedure in the near future.

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    A Major Milestone for HCRN and Hydrocephalus

    Each year the US News & World Report ranks children’s hospitals. They send out a request for data from the hospitals and send surveys to docs around the country to gauge the reputation of each hospital. Many of the questions are the same from year to year but occasionally new ones are added. For the first time, this year the survey asks if the hospital’s Pediatric Neurosurgery Program participates in the Hydrocephalus Clinical Research Network.

    We are very happy to see this. It means that the editors of US News & World Report consider HCRN participation to be important enough to include it as a criterion to evaluate children’s hospitals. But it is also validation for the importance of hydrocephalus treatment in the specialties of pediatric hospitals.

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