AHCRN Registry: Characterizing Patient Populations in the Adult Hydrocephalus Clinical Research Network (AHCRN)
Brief description of study
The purpose of this research project is to develop a patient registry, or database, for data collected during routine medical care of patients with hydrocephalus also known as water on the brain or enlarged fluid spaces (“ventricles”) in the brain. This registry is developed by The Adult Hydrocephalus Clinical Research Network (AHCRN). AHCRN is comprised of an international group of neurosurgeons, neurologists, neuropsychologist, and patient advocates who have joined forces to share data and to partner on investigations into improved treatment for the adult forms of hydrocephalus, including transitional patients who were diagnosed as children, those who acquire hydrocephalus as adults, and patients with normal pressure hydrocephalus. The registry will contain information from patients seen at many different clinics and will help researchers and clinicians to better understand hydrocephalus and improve treatment for patients with hydrocephalus. The Registry researchers will use the data collected to answer questions about how hydrocephalus is best diagnosed and treated.
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