The mission of the AHCRN is to increase awareness and understanding, accelerate research, and improve treatments for adults living with hydrocephalus. Our ultimate goal is to prevent and cure hydrocephalus.
Need for Research
There is a dearth of knowledge surrounding adult hydrocephalus. Adult neurosurgeons and neurologists simply do not know who is at risk, what the best diagnostic measures are, what treatments are most effective, or how co-morbidities will affect outcomes.
- For acquired hydrocephalus, why do some adults develop hydrocephalus after an illness or disease but others do not? What mechanisms caused the development hydrocephalus?
- Normal pressure hydrocephalus (NPH) is one of the few treatable forms of dementia, but is often misdiagnosed at Alzheimer’s disease, Parkinson’s disease, or symptoms are simply attributed to the normal aging process. For more information on NPH go to the Hydrocephalus Association’s website.
- For congenital hydrocephalus patients who were not treated as children, why have their symptoms suddenly developed? What is the best approach to managing these patients?
- In addition there is a growing population of pediatric hydrocephalus patients who are transitioning to the adult health care system. What new difficulties do they face? How does their care and treatment change?
The AHCRN will be able to close these knowledge gaps by collaborating across centers and combining data at a data coordinating center (DCC).
The AHCRN is comprised of 6 Clinical Centers located throughout the United States and Canada and the DCC located at the University of Utah. By coordinating research across 6 centers, the AHCRN will be able to efficiently collect patient data, recruit patients for future clinical trials, and simultaneously run multiple clinical trials. Data vetting and analysis is then performed by the highly talented DCC staff which includes data coordinators, managers, and biostatisticians. Through this approach the AHCRN is able to obtain and disseminate high quality and high impact research.
By pooling information into one central registry, researchers are able to create an adequate sample size of patients to study clinical 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.
In 2012, the Hydrocephalus Association (HA) inked a strategic partnership with the Hydrocephalus Clinical Research Network (HCRN) which was founded to study pediatric hydrocephalus. Given that HA’s mission spans all forms of hydrocephalus, the association sought to organize a group of researchers to address issues with adult hydrocephalus. HA organized a group of neurologists and neurosurgeons from Brown University, the University of Calgary, Cleveland Clinic, Weill-Cornell Medical Center, and the Sandra and Malcolm Berman Brain & Spine Institute at Sinai Hospital of Baltimore to found the Adult Hydrocephalus Clinical Research Network (AHCRN) in January 2012. Representing the foremost experts in adult hydrocephalus in the U.S. and Canada, these clinician-researchers are prepared and committed to pool their resources, share their research data, and work rapidly and collaboratively to identify and resolve the most pressing research questions in adult hydrocephalus.