The Kids First Data Resource Portal is now LIVE!

With more than 28,000 files of genomic and other data, researchers, clinicians, and patients will work together to accelerate research and promote new discoveries.

CHOP is looking to expand this open access database to include children with chronic medical conditions such as hydrocephalus. Greg Heuer (, CHOP, HANDS member) is involved with this effort.

See the press release:

You can start exploring this new resource TODAY! Visit and click on “JOIN NOW” to create your account.

To stay up to date on the latest foundation spotlights and news from the Kids First DRC, sign up for the email newsletter here:

2015-2017 HA Research Report

Download the 2015-2017 HA Research Report Today!

Learn more about HA’s Research Program and grantees. The 2015-2017 Research Report provides a snapshot of HA’s research activities over the past three years. We are excited about our accomplishments and cannot wait to see what is coming next.

Some highlights from the report:

  • $7.8M Spent on Research Programs since 2009
  • $3.9M Spent in the last three years
  • 150 New HANDS members since 2015
  • 18 Grants awarded since 2015
  • 3 Networks supported
  • 2 Workshops hosted

Download the Report Today
2015-2017 HA Research Report

Interested in the 2012-2014 Report?
2012-2014 HA Research Report


Posthemorrhagic hydrocephalus white paper published!

Outcomes from the 2016 PHH Workshop

A new white paper identifies important areas for research and intervention to help reduce the occurrence and effects of posthemorrhagic hydrocephalus (PHH), the most prevalent form of pediatric hydrocephalus in the United States. The paper, “Opportunities in posthemorrhagic hydrocephalus research: outcomes of the Hydrocephalus Association Posthemorrhagic Hydrocephalus Workshop” was published in Fluids and Barriers of the CNS.

The paper summarizes recommendations from the Hydrocephalus Association Posthemorrhagic Hydrocephalus Workshop, held July 25-26, 2016, at the National Institutes of Health, Neuroscience Center. The workshop brought together a wide range of researchers, including pediatric neurosurgeons, neurologists, neuropsychologists, and other key scientists. Members of the hydrocephalus community, such as family members of people affected by the condition, also participated in the workshop.

“The goals of the workshop were to identify areas of opportunity in posthemorrhagic hydrocephalus research and encourage scientific collaboration across a diverse set of fields. The white paper details the current knowledge base around PHH and offers key research targets for this complex condition,” explained Dr. Jenna Koschnitzky, the Hydrocephalus Association’s National Director of Research Programs.

Hydrocephalus is an abnormal accumulation of cerebrospinal fluid (CSF) within the cavities of the brain called ventricles. As the CSF builds up, it causes the ventricles to enlarge and the pressure inside the head to increase. PHH develops after a brain bleed and most often occurs in premature infants. It is a common and particularly insidious form of hydrocephalus, accounting for 25 percent of all pediatric hydrocephalus cases. To prevent PHH and the improve long-term outcomes, workshop participants recommended the following areas for future research:

Early Identification: It remains unclear why some children develop PHH after a brain bleed and others do not. Early identification of high risk infants could be an essential component in the development and testing of new therapies. Biomarkers that predict the development of PHH could lead to earlier intervention and improved outcomes.

Preventing Brain Bleeds: The blood vessels in the brain of premature infants are not yet fully developed, making them particularly susceptible to rupture. By protecting or strengthening these blood vessels, scientists could prevent brain bleeds in this vulnerable population.

Stopping Brain Damage: As a result of a brain bleed, blood damages the brain through a variety of mechanisms. Discovering and stopping these blood-derived factors could stop the damage and prevent the development of PHH.

Reestablish CSF Flow: After a brain bleed, it is believed that clots of blood and scar tissue block the flow of cerebrospinal fluid (CSF) through the brain. As the fluid builds up, pressure in the brain increases and causes hydrocephalus. Finding new ways to reestablish CSF flow could prevent PHH and reduce injury due to high brain pressure.

Repairing Brain Damage: PHH can damage the brain and also alter brain development. For example, infants with PHH are likely to suffer from intellectual disabilities and the co-occurrence of epilepsy and cerebral palsy. Finding strategies to repair the brain will improve long-term outcomes for those affected by the condition.

Workshop participants also discussed the importance of identifying the best care practices and treatment approaches for infants with PHH as well as the importance of conducting well designed clinical trials. Optimizing current clinical care across all hospitals will ensure that every infant has the best possible outcome while conducting high quality clinical trials will ensure that new scientific advances quickly become standard clinical practice.

The workshop was developed through the Hydrocephalus Association’s Pipeline to a Cure Initiative, a three-year initiative to increase research efforts focused on PHH.

About the Hydrocephalus Association
Founded in 1983 by parents of children with hydrocephalus, the Hydrocephalus Association has grown to be the nation’s largest and most widely respected organization dedicated to hydrocephalus. The Hydrocephalus Association began funding research in 2009. Since then, HA has committed over $7 million to research, making it the largest nonprofit, non-governmental funder of hydrocephalus research in the U.S. For more information, visit the Hydrocephalus Association website at or call (888) 598-3789.

Hydrocephalus Society: Call for Abstracts

Call for Abstracts

We are delighted to announce the Call for Abstracts for the Tenth Meeting of Hydrocephalus Society, which will be held in Bologna, Italy, from 19 to 22 October 2018!

The Organizing & Scientific Committees welcome the submission of original contributions on the progress and controversies in hydrocephalus. Accepted papers will be presented as oral or e-poster presentations.Consult the Thematic Sessions and the Submission Guidelines and submit your abstract until 31 May, 2018!

Discover Hydrocephalus 2018

New NIH PAs for Hydrocephalus!

Today NIH published two Program Announcements for prenatal and pediatric hydrocephalus.

Disease Mechanisms of Prenatal and Pediatric Hydrocephalus (R01 Clinical Trial Not Allowed)

R01 Research Project Grant

Funding Opportunity Purpose

The purpose of this funding opportunity announcement (FOA) is to support hypothesis-driven research of prenatal and pediatric hydrocephalus.  This FOA intends to support hydrocephalus research projects that examine the developmental etiology (intrinsic factors including genetics) and acquired etiology (extrinsic factors including hemorrhage and infection) of prenatal and/or pediatric hydrocephalus. Studies should focus on understanding the molecular, cellular and developmental mechanisms involved in the pathogenesis of prenatal and/or pediatric hydrocephalus.

Tools to Enhance the Study of Prenatal and Pediatric Hydrocephalus (R21 Clinical Trial Not Allowed)

R21 Exploratory/Developmental Research Grant

Funding Opportunity Purpose
The purpose of this funding opportunity announcement (FOA) is to encourage research grant applications that propose to develop or substantially modify existing cutting-edge tools that will advance prenatal and/or pediatric hydrocephalus research.  The primary objective of this FOA is to remove barriers to hydrocephalus research that are due to scarcity of tools to investigate both the disease mechanisms and alternative therapies (non-shunt) in a rigorous manner.  Applications should aim to transform the field of prenatal and/or pediatric hydrocephalus research by generating tools including animal and cell models, novel methods and innovative technologies that will be widely used throughout the neuroscience community to understand disease mechanisms and/or developing therapeutics.

MDICx Webinar Series

Check out the webinar series from MDIC!

MDIC presents an informative series of online teleconference workshops featuring emerging trends in medical technology regulatory science, MDIC projects and subject matter experts sharing perspectives, progress and opportunities.

The last webinar was focused on using patient preference for setting alpha and beta error levels in clinical trials.


November 17, 2017 – Patient values and P-Values: Exploring a new method for developing patient-centered clinical trials

Using patient preference information to set the significance level and power of a clinical trial can maximize the value of a clinical trial based on the relative importance of benefit and risk outcomes to a specific patient population. The explicit incorporation of patient preferences into clinical trial design will address the longstanding conundrum that, in an enterprise devoted to easing the burden of disease, the afflicted currently have no input into the process. By designing clinical trials that reflect patients’ urgency and risk tolerance, scarce resources can be allocated more efficiently, bringing more therapies to more patients faster and more efficiently.

The webinar speakers recently published an article on using the CDRH obesity patient preference study to set the statistical design for a hypothetical clinical trial. This retrospective analysis informs the ongoing MDIC project to use patient preferences to inform the design of Parkinson’s Disease clinical trials.


More about MDIC

MDIC is the only public-private partnership (PPP) focused exclusively on the strategic needs of the medical device ecosystem. MDIC is designed to create a collaborative environment where the industry, nonprofit organizations, and government can work together to advance pre-competitive medical device research so that the medical device community can keep pace with the needs of patients in the United States in a more timely manner.

2018 Young Investigator Travel Award: Due January 10, 2018

The Hydrocephalus Association requests applications for:

Young Investigator Travel Award

2018 National Conference on Hydrocephalus

Applications are being solicited by the Hydrocephalus Association for the Young Investigator Travel Awards to attend the 2018 National Conference on Hydrocephalus. The 2018 National Conference on Hydrocephalus is a biennial event that brings together renowned clinicians, scientists, and the hydrocephalus patient community. This award encourages young hydrocephalus researchers to attend the National Conference, meet individuals affected by the condition and their families, interact with leading clinicians and scientists, and improve their understanding of hydrocephalus and the needs of this community.

2018 National Conference on Hydrocephalus
June 28-30, 2018
Irvine Marriott Hotel


Award recipients will be required to attend:

  • Day one of the National Conference (June 28, 2018).
  • A grant writing workshop at the National Conference; and
  • The opening reception at which you will present your poster.

Application Details

Eligibility Criteria:

To be eligible, applicants must:

  • Be a Young Investigator1 at the time of application submission.
  • Be actively conducting hydrocephalus research in the United States or Canada.
  • Be a member of the Hydrocephalus Association Network for Discovery Science.

To create a HANDS account, please visit:

Application Components:
Please click here to access the application.

Completed applications are due January 10th, 5:00 pm (local time) 2018

Translation to Transform White Paper

Translation to Transform Project

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.


Click HERE to download the T2T White Paper

Click HERE to view the Translation to Transform Webinar and Workshop Agendas

2017 Rally for Medical Research

Dear HANDS members,

Since 2013, the Rally for Medical Research has been held every September. It is an opportunity for over 300 national organizations to call on our nation’s policymakers to make funding for the National Institutes of Health (NIH) a national priority and to raise awareness about the importance of continued investment in medical research that to more progress and more lives saved.

Every year the Hydrocephalus Association supports our partnership with the Rally for Medical Research by participating in the two-day event.  The Rally for Medical Research has been instrumental in raising awareness for medical innovations and investments that support NIH. As of this year, the Hydrocephalus Association has participated in many Rallies and we are excited to invite YOU to join the HA staff to represent the hydrocephalus community at these events. The goal of the week is to urge legislators to increase and/or sustain funding for NIH, to educate elected officials how NIH funding has improved lives of those living with hydrocephalus, meet other advocates, and share their unique stories with Senators and Representatives.

If you are interested in participating in Rally for Medical Research on Wednesday, September 13- Thursday, September 14, 2017, please let us know at


To register for the Rally for Medical Research, click here.


Photos from last year’s Rally For Medical Research!



Hydrocephalus 2017 has been accredited with 19 ECMECs by EACCME

Hydrocephalus 2017 – The Ninth Annual Meeting of the International Society for Hydrocephalus and Cerebrospinal Fluid Disorders (ISHCSF), Kobe, Japan, 23/09/2017-25/09/2017 has been accredited by the European Accreditation Council for Continuing Medical Education (EACCME®) with 19 European CME credits (ECMEC®s). Each medical specialist should claim only those hours of credit that he/she actually spent in the educational activity.

Meet the Invited Speakers!

Dr Ari Meri Blitz
Department of Radiology and Radiological Science, Johns Hopkins Medicine Division of Neuroradiology, Baltimore, Maryland – United States
“A radiological NPH classification”

Prof. Marijan Klarica
Department of Pharmacology & Croatian Institute for Brain Research, School of Medicine University of Zagreb – Croatia
“Cerebrospinal fluid pressure gradients and pathophysiology of hydrocephalus”

Prof. Ville Leinonen
Department of Neurosurgery, University of Eastern Finland and Kuopio University Hospital – Finland
“Taking care of hydrocephalus: a team effort – the Kuopio experience”

Dr Hiroaki Kazui
Department of Psychiatry, Osaka University, Graduate School of Medicine – Japan
“Psychiatric/Behavioral Symptoms of INPH”

Dr Ulrich W. Thomale
Pediatric Neurosurgery & Department of Neurosurgery, Campus Virchow Klinikum, Charité Universitätsmedizin – Berlin, Germany
“The role of neuroendoscopy in the treatment of pediatric Hydrocephalus”

Dr Etsuro Mori
President, Hydrocephalus 2017, Kobe
“Improving recognition of INPH in general public, medical profession, and neurological society”

Prof. Masakazu Miyajima
Juntendo University – Tokyo, Japan
“Lumboperitoneal shunts for the treatment of idiopathic normal pressure hydrocephalus”

Prof. Masakazu Miyajima
Department of Neurology Ajou University, School of Medicine – Suwon, Korea
“Current status on iNPH practice and research in Korea”

Prof. Nina Sundström
Department of Biomedical Engineering, Umeå University Hospital – Sweden
“Quality Registries – Why, how, and can the output be trusted and implemented?”

Dr Shinya Yamada
Chief of Neurosurgery Hydrocephalus and CSF Research Center, Toshiba Rinkan Hospital – Kanagawa, Japan
“Cerebrospinal Fluid Dynamics”

Attendee type Registration Rates
Delegates – Hydrocephalus Society Members (ISHCSF) 800 €
Delegates – Hydrocephalus Society Non Members (ISHCSF)1000 €
Nurses – Non Medics 400 €
Students 220 €
IHIWG Members 250 €