The Hydrocephalus Association sponsors research conferences and workshops to bring together researchers, clinicians and academics from across multiple disciplines. These conferences are designed to enable collaboration, review current state of hydrocephalus research and identify promising research opportunities that bring us closer to a cure.
Posthemorrhagic Hydrocephalus Workshop
Bethesda, MD | July 25-26, 2016
On July 25th and 26th, in Bethesda, MD, the Hydrocephalus Association Network for Discovery Science (HANDS) convened an international workshop on Posthemorrhagic Hydrocephalus (PHH). Hosted by NIH, the workshop brought together a diverse group of researchers including pediatric neurosurgeons, neurologists, and neuropsychologists, with scientists in the fields of brain injury and development, cerebrospinal fluid dynamics, and fluid barriers in the brain. Response to the workshop has been overwhelming.
“By getting such a variety of people together with diverse expertise in a contained environment, this workshop in 2 days likely advanced the science towards transforming the field more than anything else in the past 20 years,” wrote Dr. Shenandoah Robinson, a pediatric neurosurgeon from Johns Hopkins University.
Translation to Transform Workshop
Minneapolis, MN | June 16, 2016
Promising clinical and pre-clinical research on new technologies for intracranial pressure (ICP) monitoring, and pharmaceutical therapies for non-invasive management of CSF production and the prevention of some forms of hydrocephalus is underway. Considering the vulnerability of the hydrocephalus patient population and the dire consequences of not receiving timely intervention, investigators may face considerable barriers in recruiting and retaining patients for clinical trials. Clinical trial design should consider the risk tolerance of patients and families and incorporate outcomes that are important to them, i.e. patient-centered outcomes. Obtaining patient and caregiver input before clinical trials are designed and undertaken will help mitigate potential barriers.
As a first step, the Hydrocephalus Association (HA), with funding from the Patient Centered Outcomes Research Institute (PCORI), developed the Translation to Transform (T2T) Project. The T2T Project brought together medical professionals, researchers, and patient representatives to discuss clinical trial ethics, barriers to clinical trial participation, and patient-centered outcomes.
Biomarkers in Hydrocephalus Workshop
St. Louis, MO | April 27-29, 2014
This workshop brought together over 30 of the world’s leading experts in biomarkers. The scientists in attendance shared their latest research findings in all populations of hydrocephalus patients – pediatric, transitional and NPH — and their latest thinking on where the next inquiry is most likely to reap new knowledge. Speakers included Dr. Jill Morris, Program Director with the National Institute of Neurological Disorders and Stroke (NINDS), who described NIH’s funding mechanisms for hydrocephalus research and some of the latest thinking about evaluation criteria for grant submissions. Participants listened to the “lessons learned” – both good and bad – shared by Dr. Anne Fagan, a world-renowned expert in CSF biomarkers in Alzheimer’s, and Dr. Dan Ory, who is well known for his work on biomarkers for Neimann Pick disease. They discussed what kinds of support (organizational and financial) could help them overcome obstacles faced in this line of research. In the words of HA’s Chairwoman Barrett O’Connor, the keys to understanding hydrocephalus in a new way – not just as a “plumbing problem” – lie in this basic science work. Everyone in the room felt the electricity, the promise, the truly awe-inspiring challenge of discovery that stands before us.
Opportunities in Hydrocephalus Research: Pathways to Better Outcomes
Seattle, WA | July 9-11, 2012
This conference built upon the success of the NIH-sponsored workshops “Hydrocephalus Myths, New Facts and Clear Directions” held in 2005 and “Improving Outcomes in Hydrocephalus: Bridging the Gap between Basic Science and Clinical Management” in 2009. The 2012 conference was unique in important ways. The primary goal of this conference was to collectively identify hydrocephalus research priorities that held early promise for improving patient care. Recognized experts summarized the current state of their field of expertise and provided educated guidance on those areas of research that hold the most promise for early “winnable” achievements in improving patient care. The experts gathered also identified long-term goals that may lead to advanced treatment options or potential cures for hydrocephalus.
Improving Outcomes in Hydrocephalus: Bridging the Gap between Basic Science and Clinical Management
Baltimore, PA | September 14-15, 2009
This workshop was made possible by a generous grant from the National Institutes of Neurological Disorders and Stroke at the NIH and supporting grants from the Hydrocephalus Association and STARS-kids. The primary objective of this workshop was to understand the pathophysiology of hydrocephalus in order to advance clinical applications.
Hydrocephalus Myths, New Facts and Clear Directions
Bethesda, MD | September 29-October 1, 2005
We started our advocacy efforts back in 2004 when we put the wheels in motion for the first NIH sponsored workshop on hydrocephalus in September of 2005. This workshop brought together 160 experts to challenge the existing dogma and mythology surrounding hydrocephalus. Workshop participants identified critical gaps in research and clinical treatment, developed strategies for improving the level of knowledge and inspired new collaborative opportunities. This workshop came about through the combined efforts of the BrainChild Foundation, STARS-Kids, the National Institute of Neurological Disorders and Stroke (NINDS) and other offices and institutes within the National Institutes of Health.
A ground-breaking paper summarizing the findings from the 2005 NIH Workshop “Hydrocephalus: Myths, New Facts, Clear Directions” was published in the November 2007 peer-reviewed Journal of Neurosurgery: Pediatrics. The results of this workshop and whitepaper were dramatic. This Journal has been kind enough to designate the paper open access. Click the link to read “Priorities for Hydrocephalus Research: Report from a National Institutes of Health-sponsored Workshop.“