Registry Homes In on Hydrocephalus

Treatment for pediatric hydrocephalus has not advanced substantially since the invention of cerebrospinal fluid shunts more than 50 years ago, in part because its relatively low prevalence has hampered research efforts.

 A 2005 white paper by the National Institutes of Health highlighted research priorities and called for multicenter collaboratives for data collection and longitudinal studies to assess natural history.

The Hydrocephalus Clinical Research Network  was subsequently launched and began enrolling children in April 2008 at a central data coordinating center and four research centers at high-volume pediatric hospitals in the U.S. and Canada. Six additional pediatric neurosurgery centers have recently applied to join.

 HCRN has six key research initiatives including reducing infections associated with shunt surgery, understanding the epidemiology and outcomes of endoscopic third ventriculostomy (ETV), and creating a detailed registry of all hydrocephalus patients at participating institutions.

At the recent Pediatric Hospital Medicine 2010 meeting, Dr. Tamara Simon shared some early HCRN data based on 1,384 children who had undergone 2,316 neurosurgical procedures.

Age (mean 7.1 years) and gender (55% male) were similar between HCRN centers, but there were differences in practice variation in initial procedures and management of intraventricular hemorrhage, said Dr. Simon, a hospitalist with Seattle Children’s Research Institute, a participating HCRN center.

 CSF shunts were used for primary procedures in an average of 86% of cases, with a range of 76% to 90%, while ETV, which is widely used in Europe, was utilized in 10% to 24% of cases depending on the center.

 CSF shunts and ETV work in opposite ways: Shunts drain the fluid from the ventricles in the brain to a site elsewhere in the body, while ETV uses a small hole made in the floor of the third ventricle to allow the CSF fluid to  bypass the obstruction and be reabsorbed in the brain’s sub arachnoid space.

 The Pediatric Health Information System (PHIS) has been collecting data on hydrocephalus for years, but it is hoped that the HCRN will focus specific attention on this life-threatening condition for which there is no cure. This may be a difficult task given the small numbers of patients, but money talks.

Each year in the U.S., pediatric hydrocephalus patients account for $1.4 to $2 billion in total hospital charges, but only 0.6% of admissions, Dr. Simon noted.

– Patrice Wendling (on Twitter @pwendl)

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Filed under Hospital and Critical Care Medicine, IMNG, Neurology and Neurological Surgery, Pediatrics, Surgery

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