Newborn Screening Summit: Sept. 8-10

NBSTRN is excited to host the Newborn Screening (NBS) Virtual Summit to celebrate newborn screening awareness month in September.

Attend the online summit on Sept 8-10, 2020 from 9 am to 12 pm (PST).

The event is free, but you must register at Once you registered, you will receive a separate email with the Zoom information to attend the virtual summit.

Here is the fantastic line-up of speakers on the latest newborn screening research.

Speaker Line-up (in PST time zone):

Sept 8, 2020

  • 9 am – Dr. Curt Scharfe, Machine Learning in NBS
  • 10 am – Dr. Tracy Trotter, Hearing Differences
  • 11 am – Terri Klein, Advocacy and NBS

Sept 9, 2020

  • 9 am – Dr. Jennifer Kwon, Spinal Muscular Atrophy
  • 10 am – Dr. Wendy Chung, Congenital Heart Disease
  • 11 am – Dr. Ronald Wapner and Jessica Giordano, Prenatal Genetics

Sept 10, 2020

  • 9 am – John Boyle, Alissa Huston, Lynn Albizo, Advocacy, and NBS
  • 10 am – Kim Piper, Community Engagement
  • 11 am – Dr. Michele Puryear, Sickle Cell Diseases

Each speaker will speak for 30-minutes, following a 15-minutes live-chat messaging session with attendees. The summit will take place online virtually using the Zoom meeting platform.

Be informed. Be transformed with new research.

To learn more about newborn screening research, visit

This project has been funded in whole or in part with Federal funds from the NICHD, National Institutes of Health, Department of Health and Human Services, under Contract No. HHSN275201800005C.


A Virtual Experimental Biology in 2021

Given the ongoing COVID-19 pandemic, Experimental Biology has been forced to cancel our in-person meeting in Indianapolis, Indiana, May 1-4, 2021. However, we will offer Experimental Biology in a virtual format, which means that you and your colleagues will have many new and exciting opportunities for scientific discovery without travel.

Our new virtual meeting will bring you the latest research in anatomy, biochemistry, molecular biology, investigative pathology, pharmacology, and physiology. The 2021 dates will be announced soon.

What will our new virtual conference look like? Well, that’s up to you!

Please take five minutes to complete this brief survey by August 14, 2020. Your input will make Experimental Biology 2021 a creative and stimulating meeting that delivers the outstanding scientific content you expect.

As a thank-you for sharing your ideas, you can enter into a drawing for a $100 Amazon gift card.

Database Update!

Our databases page has been updated and a new database has been published! Find below descriptions of the information available in each database:

  • Prevalence: Prevalence and incidence rates for different etiologies of hydrocephalus among different populations.
  • Comorbidities: Prevalence of a variety of comorbid conditions among different etiologies of hydrocephalus.
  • Genetics: Known genetic causes of hydrocephalus in both humans and animals.
  • Animal Models – Kaolin: Information on different methodologies and models for inducing hydrocephalus in animals via kaolin injection.
  • Animal Models – Blood Products [NEW]: Information on different methodologies and models for inducing hydrocephalus via injection of various blood products.

All these databases are also downloadable. If you have any papers you would like added to a database, please send them to:

Grant Opportunity: 2020 Innovator Awards

The Hydrocephalus Association requests applications for:


Innovator Award Research Focus:

Goal:  To provide seed funding for high-quality, innovative research that potentially improves hydrocephalus treatments and outcomes or changes our understanding of hydrocephalus.

Project Focus: Identifying new mechanisms responsible for the development of the hydrocephalus.

Identifying or testing new therapeutic targets.

Preclinical or clinical testing of new drug therapies and other treatments.

Emphasis will be placed on innovation and potential impact of the project on hydrocephalus research and clinical outcomes. Investigators studying any etiology of hydrocephalus are invited to submit a letter of intent (LOI). There are no restrictions on the age of onset, type, or stage of hydrocephalus that can be studied.

This award will support research in the following areas:

  • hydrocephalus pathogenesis and secondary injury mechanisms (e.g. cellular, molecular, signaling, developmental, and genetic mechanisms).
  • drug target identification.
  • preclinical drug development and testing.
  • preclinical non-surgical interventions.
  • preclinical or clinical medical device testing.*
  • new clinical treatments or interventions. *

*All applicants intending to include human subjects must indicate this in the LOI and will be contacted to determine whether the project falls within the scope of this RFA.

This award will not support:

  • incremental progress of an established research program or project.
  • minor modifications to current treatment approaches.
  • development of new animal, in vivo, or in vitro models (See NIH PA-18-623 for funding opportunities in this area).
  • imaging studies (intervention studies using imaging as an outcome measure are allowed).
  • development or testing of intracranial pressure monitors.
  • development of tools to aid in clinical decision making.
  • development or modification of tools to advance hydrocephalus research (See NIH PA-18-623 for funding opportunities in this area).
  • business plan development.
  • projects with commercial development partners (i.e., participation of for-profit corporation(s)).

Award Details:

This award provides short term seed funding (up to 12 months).

  • The project must be designed to be completed within the 12-month timeline.
  • Proposals must be submitted for actual costs at one of two funding levels, $25,000 or $50,000.
  • Total funding for this award cycle is expected to be $200,000.
  • Preliminary data is not required.
  • The award provides no institutional overhead.

For more information go to:

Hydrocephalus Society: Call for Abstracts

Email Image

Call for Abstracts!

We are pleased to announce the Call for Abstracts of the Thirteenth Meeting of the Hydrocephalus Society, which will be held in Gothenburg, Sweden from 11 to 14 September 2020!

Don’t miss the opportunity to present your research and outcomes and have substantive conversations with peers!

The International Organizing Committee welcomes the submission of abstracts for oral or e-poster presentation.

Consult the Thematic Sessions and submit your abstract until the 1st of May 2020!

To facilitate the submission process and the subsequent follow up process, please consider the following guidelines, information, terms and deadlines mentioned.

visit the conference website:

or the society website:

Should you have any inquiries, please send an email or write at:

74, Ethnikis Antistaseos str.

Sigma Block 1

Gr 55133, Kalamaria, Thessaloniki, Greece

we will be happy to assist.




Newest Results from ELVIS: Early vs. Late Ventricular Intervention

Newest Results from the Early vs. Late Ventricular Intervention Study (ELVIS) in Preterm Infants with Posthemorrhagic Ventricular Dilation

By: Rebecca A. Dorner, MD MHS
Neonatology Fellow
Johns Hopkins Hospital

The randomized controlled ELVIS trial seeks to answer the question whether earlier or later neurosurgical interventions for preterm infants with posthemorrhagic ventricular dilation are better. In this study, intervention was defined as cerebral spinal fluid tapping by lumbar puncture (maximum of 3), followed by taps from a ventricular reservoir, all before a ventriculoperitoneal (VP) shunt. Early intervention was defined as intervention at a smaller ventricle size cutoff (ventricular index (VI) >97% and anterior horn width (AHW) >6 mm), in comparison to a larger ventricular size (VI>97% + 4 mm and AHW >10 mm).

The first paper1 from the study group analyzed results from 126 infants <34 weeks with grade III/IV intraventricular hemorrhage who participated in the trial from 2006-2016. Randomization to the study groups was at day 9 of life (median). The first intervention took place on day 10 (median) in the early intervention group versus day 15 in the late intervention group. They found that there was no significant difference in rates of the combined outcome of VP shunt or death in infants treated at a low versus high threshold. Shunt incidence was 19% (median) in the early intervention group versus 23% (median) in the late intervention group. Not surprisingly, infants with intervention in the low threshold group had more interventions as their first procedure was earlier.

The newest paper,2 recently published in the Journal of Pediatrics, is an additional analysis of the magnetic resonance imaging (MRI) results from this study. Babies’ MRI results at term age were given a brain injury score (Kidokoro Global Brain Abnormality Score) and ventricle sizes were measured too. This analysis found that infants in the earlier intervention/smaller ventricle size cutoff group had less brain abnormalities overall, and specifically less myelination delay, less thinning of the corpus callosum, less lateral ventricle dilation, and improved white and gray matter subscores. On these term age MRIs ventricle sizes were also lower in the smaller ventricle size cutoff groups.

The authors suggest that although the study failed to demonstrate a further reduction in the need for a VP shunt at the lower threshold, the need for VP shunt placement for both study groups is the lowest reported so far.  Smaller ventricle volumes and lower brain abnormality scores in the MRI studies might indicate the possible beneficial effects of earlier intervention in preterm infants with posthemorrhagic ventricular dilation. However, we still do not know if these improvements in MRI scores will translate to the most important results, lower rates of neurodevelopmental impairments in the future. It is important to wait for these results, as pointed out by Dr. Raye-Ann deRegnier in “The Editors’ Perspectives,” as the interventions (lumbar puncture, reservoir, VP shunt) themselves also have important complications.


  1. de Vries LS, Groenendaal F, Liem KD,  Heep A, Brouwer AJ,  van ‘t Verlaat E, et al. Treatment thresholds for intervention in posthaemorrhagic ventricular dilation: a randomised controlled trial. Arch Dis Child Fetal Neonatal Ed, 104: F70-F75, 2019.
  2. Cizmeci MN, Khalili N, Claessens NHP, Groenendaal F, Liem KD, Heep A, et al. Assessment of Brain Injury and Brain Volumes after Posthemorrhagic Ventricular Dilatation: A Nested Substudy of the Randomized Controlled ELVIS Trial. J Pediatr 208:191-197.e192, 2019

Keystone Symposia Announcement: February 16-19, 2020


Cerebral Fluid Flow and Function: Lymphatics, Glymphatics and the Choroid Plexus

Scientific Organizers: Edwin S. Monuki, Maria Lehtinen, and Maiken Nedergaard

Eldorado Hotel & Spa,Sante Fe, New Mexico on 16-19 February 2020.


  • Scholarship Deadline: Oct 15, 2019
  • Discounted Abstract Deadline: Oct 15, 2019
  • Abstract Deadline: Nov 19, 2019
  • Discounted Registration Deadline: Dec 17, 2019

Summary: The cerebrospinal fluid (CSF) has long been a “missing link” in our understanding of brain form, function, and disease. However, recent work has begun to illuminate how the CSF regulates the brain in ways that extend far beyond its passive historical roles and provides unique opportunities for studying, diagnosing, and potentially treating brain disorders. This Keystone conference brings together an interdisciplinary group of new and established scientists to capture this newfound excitement about the CSF. By exchanging discoveries – about its sources (choroid plexus), routes (glymphatics), drainage (lymphatics), and clinical utilities – and by fostering new ideas, collaborations, and training opportunities, this conference aims to coalesce an international community that can propel the CSF field forward. (Optional/TBD: This meeting is being held jointly with the “medicinal chemistry to cross the blood-brain barrier/BBB” meeting to stimulate thinking about CSF-based medicinal therapies, given the advantages of CSF over blood in being “behind” the BBB and in equilibrating with the interstitial fluid surrounding brain cells.)

For more information click HERE.

Hydrocephalus Society – Call for Abstracts


Call for Abstracts!

The final date for the Abstract Submission for the Eleventh Meeting of the International Society for Hydrocephalus and Cerebrospinal Fluid Disorders, which will be held in Vancouver, Canada from 13 to 16 September 2019, is approaching!

The Organizing and 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 3 May 2019!


Discovery Hydrocephalus 2019!

For more information you can visit their website or send them an e-mail at

Physician Scientist Fellowship: Doris Duke Charitable Foundation Announcement

The Doris Duke Charitable Foundation Announces a

New Award for Subspecialty Fellows


2019 Physician Scientist Fellowships

The Doris Duke Charitable Foundation (DDCF) today announced the creation of the Doris Duke Physician Scientist Fellowship. An open request for proposals will be launched in April 2019 to clinical investigators currently engaged in subspecialty fellowship training. Through the Physician Scientist Fellowship, DDCF aims to encourage emerging physician scientists to establish careers in clinical research.
Click here to find out more.


In keeping with the wishes expressed in Doris Duke’s will, experiments that use animals or primary tissues derived from animals will not be supported by this program.