The Hydrocephalus Association (HA) and the pediatric-focused Hydrocephalus Clinical Research Network (HCRN) signed a partnership on June 4, 2012, to ensure the continuation of HCRN’s substantial research into treatments and outcomes in hydrocephalus that benefit HA’s membership. The partnership expands HA’s Research Initiative beyond its young investigator and basic science awards, with a burgeoning body of research intended to advance treatments for those who suffer from the condition.
In formalizing the partnership, HA committed financially to sustain the work of the network. HA’s funding commitment is substantial – more than $1M through December 2014. These funds support research site coordinators at each site and the shared data coordinating center at the University of Utah, thereby allowing patient populations to be pooled and studied more rapidly.
HCRN receives support from a variety of organizations apart from HA, including private donors, participating hospitals, foundations, and the National Institutes of Health (NIH). While HCRN will always seek public funding for its studies and scientists’ careers, the partnership with HA will allow HCRN to continue its promising work with more assurance of continued support. HA and HCRN will work together to financially sustain and promote HCRN’s research.
The Hydrocephalus Clinical Research Network (HCRN) grew out of the frustration of parents and doctors struggling to save children from a sentence of life-long disability. A collaboration of multiple research institutions, HCRN’s mission is to overcome the obstacles that have stymied previous research efforts: too few patients to study in any one hospital, uncoordinated research, and under-staffed/under-funded studies. HCRN’s current organization consists of a central data coordinating center, and nine (9) research centers at high-patient-volume pediatric hospitals in North America. Principal investigators at member institutions each lead an important study designed to yield results for improving hydrocephalus treatment. All centers enroll eligible patients in all appropriate studies concurrently. This model makes sure the studies are both adequately powered by sufficient sample sizes and are appropriately staffed, while also ensuring data is collected quickly and professionally.
- Reducing infections associated with shunt surgery.
- Creating a detailed registry of all hydrocephalus procedures at participating institutions.
- Understanding the epidemiology and outcomes of Endoscopic Third Ventriculostomy (ETV)
- Treatment of CSF shunt infection.
- Ventricular Involvement in Neuropsychological Outcomes in Pediatric Hydrocephalus
- CSF Bio-Markers for Post Hemorrhagic Hydrocephalus
- Improving shunt placement using ultra-sound guidance.
- Management of intraventricular hemorrhage in premature children.
Details of these studies can be found on HCRN’s website.