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.

For the many children diagnosed with hydrocephalus, the only available treatment involves brain surgery.

A surgeon inserts a permanent tube and valve system, called a shunt, into the child’s brain. This solution has remained largely unchanged since the shunt’s invention, over 50 years ago, by a frustrated parent of a child with hydrocephalus. While shunts have saved lives, there have been devastating costs. Over half of shunts placed need surgical repair or replacement within two years of insertion , and surgical infection rates of 8-10% are common . 40,000 of these shunt-related surgeries are conducted each year in the US at a cost of $1B . More importantly, developmental outcomes for kids with shunts are distressing. Nearly half score below 80 on standardized intelligence tests and only half attend mainstream schools. Nearly 60% are not independent in adulthood.

 

To date, there has been no coordinated research effort focused on improving these poor outcomes for kids with hydrocephalus.

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