Research Events
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.
Idiopathic Normal Pressure Hydrocephalus
Falls Church, VA | Oct 15-16, 2024
This research workshop focused on idiopathic normal pressure hydrocephalus (iNPH) focused on advancements in diagnosis, treatment, and patient care with the goal of establishing clear research priorities for iNPH over the next 10-20 years. Topics included:
- Advancing Diagnosis: Experts discussed innovations in current diagnostic methods, exploring how artificial intelligence (AI) and machine learning can improve accuracy in detecting and measuring iNPH progression. The goal is to make early detection more accessible and reliable.
- Incorporating the Patient and Caregiver Perspective: The patient and caregiver panel focused on topics surrounding delayed care, navigating healthcare, supporting caregivers, and research priorities.
- Biomarkers: The latest research on biomarkers for iNPH promises new pathways to identify potential drug targets and non-invasive treatment options.
- CSF Circulation, Glymphatics, and Lymphatics: Experts delved into the role of CSF dynamics and the glymphatic and lymphatic systems in iNPH, providing new insights into the disease’s mechanisms and potential treatment approaches.
- Funding and Advocacy: Representatives from the National Institutes of Health, Dr. Jill Morris, and Department of Defense, Dr. Kathryn Argue, shared information about their programs and upcoming funding opportunities. Additionally, Erin Darbouze, Senior Director of Policy and Advocacy at Research!America, highlighted how clinicians and scientists can advocate for increased hydrocephalus research funding.
Developing Non-Invasive Hydrocephalus Therapies: Advancing Towards Clinical Trials
Cincinnati, OH | April 12-13, 2024
This research workshop builds directly upon the successes of the 2023 workshop, responding to the urgent need for non-invasive therapies for hydrocephalus. This workshop demonstrates our shared dedication to pushing the boundaries of hydrocephalus research. We aim to leverage the collective energy of scientists, physicians, regulatory experts, and funders to foster innovation and address HA’s critical patient-centered Community Research Priorities, with a particular emphasis on:
- Developing new treatments that do not require brain surgery to manage hydrocephalus
- Developing new one-time treatments to manage hydrocephalus (i.e. permanent treatments that do not require additional interventions)
- Developing ways to prevent the development of hydrocephalus
Our focus this year is on advancing non-invasive treatments for hydrocephalus through consensus models, endpoint measurements, and external collaborations. The program was carefully created to contribute significantly to the advancement of preclinical and clinical trials, and provide foresight for regulatory and funding processes. There will be direct opportunities to engage in conversations with governance agencies and industry liaisons, offering a valuable chance to gain insights into FDA expectations and leverage the expertise of companies.
Developing Non-Invasive Hydrocephalus Therapies: Molecular and Cellular Targets
Dallas, TX | September 27-29, 2023
This workshop, dedicated to the legacy of Dr. Michael Pollay, focused on advancing non-invasive hydrocephalus treatment research. Key scientific themes included:
- Artificial Intelligence (AI), Machine Learning, and Big Data: Ongoing research endeavors in AI, machine learning, and big data were prominent as scientists learned more about the possibilities of these emerging technologies to enhance diagnosis, treatment, and management strategies for hydrocephalus.
- Emerging Targets in Drug and Gene Therapies: Advances in the preclinical and clinical arenas of drug and gene therapies for hydrocephalus. Presentations highlighted promising targets at various stages of development for the different etiologies of hydrocephalus.
- How to Advance into Clinical Trials: Scientists currently conducting clinical trials shared their process in navigating the many steps required in initiating and conducting clinical research. Presentations on clinical trials past and present in hydrocephalus clarified the context and highlighted the remaining work needed.
- Funders Panel: Representatives from governmental agencies including Jill Morris (NIH, NINDS), PJ Brooks (NIH, NCATS), and Cecilia Dupecher (DOD, CDMRP) spoke.
Improving Cognitive and Psychological Outcomes in Hydrocephalus
Houston, TX | October 20-21, 2022
The workshop delved into the underlying neuropathology of the cognitive and psychological challenges individuals with hydrocephalus face across the age spectrum. The presentations encompassed a wide range of key topics related to improving the neuropsychological and cognitive outcomes of those living with hydrocephalus. Discussions focused on moving the field forward - insights were given from patient panels, scientists, physicians, and neuropsychologists. The collective aim was to collaboratively propel the field forward, identifying gaps in knowledge and determining actionable steps to address them. During the first day of the conference, attendees listened to sessions on basic and translational science, and cognitive and psychological phenotypes. They were also treated to a performance of spoken word by Dani Lucchese, a member of our hydrocephalus community, reading her poem about life with hydrocephalus. On the second day of the conference, attendees listened to sessions on transitions, treatment, and quality of life, and moving the field forward. Robin Ennis then shared her performance of spoken word followed by a Patient Perspective Panel that included Robin Ennis, Dani Lucchese, Amanda Garzon, and Gary Chaffee.
Driving Common Pathways: Extending insights from posthemorrhagic hydrocephalus
St. Louis, MO | November 4-5, 2019
The workshop brought together recent HA funded PHH and non-PHH researchers with select outside researchers to discuss their current research with a specific focus on common molecular pathways implicated in PHH and other forms of hydrocephalus. The goal was to provide a small group setting in which the researchers could learn about and explore areas of potential overlap between hydrocephalus etiologies with a focus on identifying drug targets that could positively impact multiple etiologies of hydrocephalus.
NIH Hydrocephalus Workshop: State-of-the-Science and Future Directions
Baltimore, MD | April 18-19, 2018
On April 18th and 19th, in Baltimore, MD, the NIH convened an international workshop that spanned the scope of hydrocephalus research from basic science through clinical care for pediatric and adult patients. HA was intimately involved during workshop planning and sponsored a research dinner on the 18th.
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.
See the full agenda and speaker abstracts >
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.
View the Translation to Transform Webinar and Workshop Agendas >
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. Read the "Priorities for Hydrocephalus Research: Report from a National Institutes of Health-sponsored Workshop" paper.