The Hydrocephalus Association has committed $500,000 toward the launch of an adult-focused hydrocephalus clinical research network.
Bethesda, MD | June 17, 2014
The Hydrocephalus Association today announced its $500,000 funding commitment toward the launch the Adult Hydrocephalus Clinical Research Network (AHCRN) to address adult hydrocephalus, which includes the only form of “treatable dementia,” Normal Pressure Hydrocephalus (NPH).
“The need for this clinical research network is great for many reasons. Children with pediatric hydrocephalus grow up and transition into adults with hydrocephalus, while others will develop hydrocephalus later in life. We urgently need to improve our understanding of the treatment issues for all of these patients to improve quality of care so that these patients can experience a better quality of life,” stated Dr. Mark Hamilton, Chair of the AHCRN and Director of the Adult Hydrocephalus Program at the University of Calgary, Canada. “It is estimated that about 5% of older adult individuals diagnosed with dementia are, in fact, suffering with normal pressure hydrocephalus. While we can treat NPH with a shunt operation, we still don’t understand why this condition develops, how to prevent its onset, or whether a shunt operation is the best way to treat a patient with NPH. We are in this predicament because we have not had adequate funding to support the critical research that is needed. Creation of the AHCRN is an important step forward that will help us to start correcting this problem.”
Hydrocephalus is a serious condition causing an abnormal increase of cerebrospinal fluid in brain cavities which can affect people of all ages. There is no cure. The only treatment option requires brain surgery. According to a recent study, an estimated 700,000 older Americans who suffer from symptoms similar to those associated with Alzheimer’s disease or Parkinson’s disease may actually have NPH and are unaware of the cause of their challenges. (source: Neurology).
Through multi-site research centers, the AHCRN hopes to find better ways to treat hydrocephalus, and to identify new diagnostic methods to diagnose NPH, which is often misdiagnosed or goes undiagnosed because the symptoms resemble those of dementias or even normal aging. The Hydrocephalus Association has been instrumental in providing the startup funding and infrastructure support for this groundbreaking network, which will make a positive impact for treating the adult forms of hydrocephalus.
The AHCRN start-up committee consists of neurosurgeons, neurologists, a neuropsychologist, philanthropists, business and nonprofit experts who have joined forces to share data and to partner on investigations into improved treatment for the adult forms of hydrocephalus. Within the network are six clinical centers across the U.S. and Canada, and a central data coordinating center. By pooling information into one central registry, researchers will be able to cultivate an adequate sample group of patients for the clinical study of problems in adults with hydrocephalus. This centrally pooled data allows researchers to overcome the obstacles that have stymied previous research efforts for years—too few patients to study in any one hospital, uncoordinated research under different protocols and under-staffed studies.
About the Hydrocephalus Association
Founded in 1983 by the parents of children with hydrocephalus, the Hydrocephalus Association is the nation’s largest and most widely respected organization dedicated to hydrocephalus. More than 60 percent of the association’s funding comes from individual donations, and approximately 35 percent comes from foundation and corporate grants. The Hydrocephalus Association’s mission is to eliminate the challenges of hydrocephalus. For more information, visit the Hydrocephalus Association website at https://www.hydroassoc.org or call (888) 598-3789.