The Adult Hydrocephalus Clinical Research Network (AHCRN) is comprised of a group 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, including transitional patients who were diagnosed as children, those who acquire hydrocephalus as adults, and patients with normal pressure hydrocephalus. The Hydrocephalus Association (HA) has been instrumental in providing the startup funding and infrastructure support for the network.
AHCRN currently consists of multiple clinical centers and a central data coordinating center (DCC). The clinical centers, which currently include the University of Calgary, The Cleveland Clinic, The Sandra and Malcolm Berman Brain & Spine Institute of Baltimore’s Sinai Hospital, Weill Cornell Medical College, The University of British Columbia, and Brown University, send basic epidemiological information about hydrocephalus patient events to the DCC in Salt Lake City. 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. The registry can be used to:
- Help investigators understand the variability, progression, and current treatment practices for hydrocephalus in adults, with an ultimate goal of better guiding and assessing diagnostic approaches, understanding the influence of comorbidities on presentation and outcomes, improving current or identifying new therapeutic interventions, enhancing outcomes, and minimizing complications of therapeutic interventions;
- Provide pilot and descriptive data necessary for hypothesis generation and study design for studies under development by the AHCRN; and
- Develop better ways to diagnose Normal Pressure Hydrocephalus (NPH), particularly by specialties outside of neurosurgery and neurology (such as general medical practitioners, family physicians, internists, and geriatric physicians).
The founding members of the AHCRN include: Mark Hamilton, MD, from the University of Calgary; Mark Luciano, MD, PhD, from The Cleveland Clinic; Michael Williams, MD, of The Sandra and Malcolm Berman Brain & Spine Institute in Baltimore; Norman Relkin, MD, PhD, of the Weill Cornell Medical College in New York; Heather Katzen, PhD, of the University of Miami in Florida; Petra Klinge, MD, PhD, of Brown University in Rhode Island; and John Kestle, MD, of the University of Utah and co-founder of HCRN.