Over 500 Adult Hydrocephalus Patients Enrolled in Registry

We are happy to announce that over 500 patients are currently enrolled in the Adult Hydrocephalus Clinical Research Network (AHCRN) core data project. At the biannual meeting held last week in Vancouver, BC, the network investigators discussed current data as well as new projects in the pipeline. New projects focused on topics ranging from the effectiveness of endoscopic third ventriculostomy (ETV) in adult patients with non-communicating hydrocephalus to studying changes in brain connectivity and after treatment.

Patients continue to be enrolled at five sites in the United States and Canada. Currently, patients can be enrolled at the University of British Columbia, the University of Calgary, the Cleveland Clinic, Johns Hopkins, and the University of Washington.

The AHCRN is modeled after the highly-successful, pediatric-focused Hydrocephalus Clinical Research Network (HCRN). The AHCRN initial focus is on a core data project that is collecting patient demographics, hydrocephalus cause, diagnosis information, surgical and medical management information, images, and cerebrospinal fluid (CSF) samples for biobanking. This initial data will be used to understand the variability, progression, and current treatment practices for hydrocephalus in adults and inform the development of hypothesis-driven research. The creation of a CSF biobank and image database will help fast track research enabling basic, translational, and clinical research to move forward in parallel. The Hydrocephalus Association is proud to fund the AHCRN as they move research from bench to bedside to find new treatments, preventions and cures for adults living with hydrocephalus and Normal Pressure Hydrocephalus.

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