• 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

    Dr. John Kestle Honored at Hydrocephalus Association Vision Dinner

    Dr. Kestle Accepts Leadership Award

    Dr. Kestle Accepts Leadership Award

    Dr. John Kestle received the Leadership Award at the 2014 Hydrocephalus Association Vision Dinner in New York City on Thursday, October 16, 2014 for his leadership in hydrocephalus research and advancing treatments. Dr. Kestle’s role in past multi-center trials and his founding of the Hydrocephalus Clinical Research Network were cited as examples of his vision and leadership in the field of hydrocephalus. Dr. Kestle is pictured here giving the audience a brief overview of some of the past and current work of HCRN including current research into Endoscopic Third Ventriculostomy with Choroid Plexus Coagulation.

    HCRN Garners $1.8M in Funding to Conduct Clinical Trial

    The Patient Centered Outcomes Research Institute (PCORI) announced it was awarding $1.8M in support of an HCRN proposed randomized control trial to determine the most effective entry site for placing a shunt. The trial builds off of the preliminary HCRN study lead by Principal Investigator Dr. Bill Whitehead of Texas Children’s Hospital and Baylor School of Medicine. The trial, which will be conducted over a three-year period, seeks to determine which entry site for shunt placement increases the long-term survival rate of the shunt and thereby improving the quality of life for the patient.

    PCORI grants differ from NIH grants because the involvement of the patient community in the study process is essential to the scoring and award of the grant. HCRN partnered with the Hydrocephalus Association (HA) to involve patients and caregivers in the study selection, development and execution in the form of surveys and a patient advisory council. HA will help with the development of consent forms, the monitoring of the data and ultimately the dissemination of the results.

    The study will begin accruing patients at all nine HCRN centers starting in 2015.