The Hydrocephalus Association (HA) and the Hydrocephalus Clinical Research Network (HCRN) announced on June 4, 2012 that the two organizations have signed a partnership to ensure the continuation of HCRN’s substantial research into treatments and outcomes in hydrocephalus that benefit HA’s membership. HCRN Chairman Dr. John Kestle will join the board of directors of HA and the organizations will work together to promote HCRN’s research.
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 hydrocephalus. HCRN conducts multiple simultaneous studies, so it is able to advance research more quickly than traditional clinical studies. HA will promote HCRN’s research and funding needs to its members. 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 allow patient populations to be pooled and studied more rapidly.
HCRN receives support from a variety of organizations including private donors, participating hospitals, foundations and the National Institutes of Health. While HCRN will always seek public funding for its studies and scientists’ careers, the partnership will allow HCRN to continue its promising work with more assurance of continued support.
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 seven (7) 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.