Update on the Adult Hydrocephalus Clinical Research Network

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Adult HydrocephalusThe Adult Hydrocephalus Clinical Research Network (AHCRN) met in early February to continue its groundbreaking work of forming a multi-center collaborative research network to focus on adult hydrocephalus. 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. The official name of the network will be the Adult Hydrocephalus Clinical Research Network, or AHCRN.

The Benefits of Forming a Research 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:

1. 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;

2. Provide pilot and descriptive data necessary for hypothesis generation and study design for studies under development by the AHCRN; and

3. 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).

February Meeting Summary

The group has been meeting regularly by phone and in person to develop the policies, procedures and forms necessary to perform multisite collaborative research. The February meeting, held in Salt Lake City, brought together the Planning Committee to work through a full agenda.

During this meeting, the group worked on finishing the data registry protocol and the consent and data collection forms for use with adult hydrocephalus patients treated at these centers. These forms allow for the collection of clinical data on patient histories, treatments, types of shunts used, ETVs, complications, follow-up, effectiveness of treatments, etc. Capabilities are also being developed for banking of electronic images (scans) and for cerebrospinal fluid (CSF) tissue banking to retain samples for future studies.

In addition, a protocol was reviewed for a randomized placebo-controlled trial on the effectiveness of CSF shunting in idiopathic Normal Pressure Hydrocephalus (iNPH). If funded, this would be the first clinical study to be performed by this group.

The Formation of AHCRN

This consortium came together in early 2012, in part because of the success of the pediatric-focused Hydrocephalus Clinical Research Network (HCRN). HCRN grew out of the frustration of parents and clinicians struggling to save children from a sentence of life-long disability. Because children with hydrocephalus transition to adulthood, and because many people develop hydrocephalus as adults, the HA Board identified a similar need to coordinate a group of clinical centers studying adult hydrocephalus, and raised the funds for the development of the infrastructure for the network.

This is an exciting opportunity to make a positive impact for treating the adult forms of hydrocephalus. We are still only at the beginning! Additional funding is needed to maintain and grow the research capabilities of AHCRN. People with pediatric hydrocephalus will grow and transition into adults, while others will develop hydrocephalus as adults. The need is great. Through multisite research, we hope to find better ways to treat hydrocephalus. Additionally, we hope to identify new diagnostic methods to diagnose NPH, which is often misdiagnosed or goes undiagnosed because it is confused with dementias associated with Alzheimer’s disease, Parkinson’s Disease, or even normal aging.

If you’d like to further HA’s research efforts, please consider making a donation today!

AHCRN Planning Committee

The AHCRN Planning Committee is chaired by Mark Hamilton, M.D., Ph.D., Director of the Adult Hydrocephalus Program at the University of Calgary. He is joined by neurosurgical colleagues John Kestle, M.D., M.Ph., (Primary Children’s Hospital, Salt Lake City) and Mark Luciano, M.D., Ph.D. (Cleveland Clinic, Cleveland). Neurologists involved in AHCRN include Norman Relkin, M.D., Ph.D., (Weill Cornell Medical College) and Michael Williams, M.D., (The Sandra and Malcolm Berman Brain & Spine Institute) joined by neuropsychologist Heather Katzen, Ph.D. (University of Miami). Representing HA are Paul Gross (HA Past Chairman and Co-Chair of HA’s Research Committee), Marvin Sussman, Ph. D. (past Board member and member of the Research Committee), and Dawn Mancuso (HA’s CEO). Also in attendance at the meeting in February were a group of project managers, program directors, data managers, statisticians, and others representing the Data Collection Center at the University of Utah.

3 Comments for : Update on the Adult Hydrocephalus Clinical Research Network
    • Keith D Hendricks
    • October 1, 2018

    Where in Utah can someone get tested and treated for NPH?

    • Joanne Ferguson
    • August 13, 2016

    Would you be able to include my husband in the trials and hopefully help him. We are in Walpole, MA. I would appreciate any help you can give us.

    • Jeanne M Woods
    • April 7, 2016

    Our son Hunter Woods, born 3 months (26 weeks) early and weighing in at: head / 2#, body was 1.1 #, May 16, 1989.
    He’s had a total of 38 surgeries, not all for hydrocephalus.
    Dr Michel Edwards and Dr Samuel Ciricillo changed his ventricular peritoneal shunt (was not absorbing CSF well), to a ventricular pleural shunt. He will be 27 yrs old May 16, 2016.
    My question: where can we get more information on his pleural shunt.
    He is having some very negative issues with his legs/calves/ feet, and we are very, very concerned about what’s happening. We live in Redding CA.
    Please email to jmamwoods@yahoo.com if you think you have information to pass on so we can research about him or a Dr who will understand his situation and work with us.

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