Scientific Networks are Changing the Research Landscape

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Hydrocephalus ResearchIn 2012, the Hydrocephalus Association (HA) and the National Institutes of Health (NIH) sponsored a symposium on hydrocephalus research, “Opportunities for Hydrocephalus Research: Pathways to Better Outcomes.” The primary goal of this conference was to collectively identify hydrocephalus research priorities that held early promise for improving patient care. Recognized experts provided educated guidance on areas of research that hold the most promise for early “winnable” achievements in improving patient care. The gathered experts also identified long-term goals that may lead to advanced treatment options or potential cures for hydrocephalus.

The priorities and recommendations identified during this conference were published last week in the Journal of Neurosurgery. The paper, “An update on research priorities in hydrocephalus: overview of the third National Institutes of Health-sponsored symposium ‘Opportunities for Hydrocephalus Research: Pathways to Better Outcomes,‘” outlines hydrocephalus research priorities that have the potential to impact patient care in the next five years.  The priorities are divided into four themes: (1) Causes of Hydrocephalus, (2) Diagnosis of Hydrocephalus, (3) Treatment of Hydrocephalus, and (4) Outcomes in Hydrocephalus.

The research priorities related to the Causes of Hydrocephalus include obtaining a greater understanding of how the condition develops in conjunction with developing better research models. Normal Pressure Hydrocephalus (NPH) was the main focus for the theme: Diagnosis of Hydrocephalus. Priorities included implementation of standardized protocols, development of shared repositories, and implementation of prospective studies related to biomarker identification and new imaging techniques. Priorities under the theme, Treatment of Hydrocephalus, focused on improving shunt technology and preventing shunt obstruction through advances in bioengineering as well as clinical testing of alternative interventions such as endoscopic third ventriculostomies with choroid plexus cauterization (ETV/CPC).  Finally, priorities for Outcomes in Hydrocephalus keyed in to the need for outcome measures specific to the hydrocephalus community, the need for better long term neuropsychological and neurocognitive studies, and better understanding of the prevalence and incidence of hydrocephalus across our diverse population.

Over the past three years, HA has been working to tackle these priority areas. In 2012, HA formally partnered with the pediatric-focused Hydrocephalus Clinical Research Network (HCRN) in order to conduct high quality, high impact clinical research. From there, HA developed the Adult HCRN (AHCRN) to focus on the NPH population, people with acquired hydrocephalus, and pediatric patients who are transitioning into adulthood. This year, HA has started the HA Network for Discovery Science (HANDS) in order to developed shared repositories for information and research materials such as cerebrospinal fluid (CSF) and explanted shunts. Through HANDS, HA also launched a new grant mechanism aimed at funding innovative, basic science, cure-focused research. Together these networks are changing how hydrocephalus research is conducted and accelerating research progress.

To read the full report click here.

The paper was written by the Hydrocephalus Symposium Expert Panel led by Dr. James ‘Pat’ McAllister and Dr. Samuel Browd. Dr. McAllister is a Professor of Neurosurgery at Washington University in St. Louis. Dr. McAllister is a member of the HA Medical Advisory Board and received HA’s Established Investigator Award for his research, Novel neurobiological interventions for the treatment of hydrocephalus, in 2011. Dr. Browd is a neurosurgeon and Director of the Hydrocephalus Program at Seattle Children’s Hospital. Dr. Browd is also a principal investigator for the Hydrocephalus Clinical Research Network.

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