2026 Research Workshop
Why Hydrocephalus Matters
Population Burden - Economic Impact - Barriers to Care
July 21-22, 2026 | Indianapolis, Indiana
2026 Research Workshop
July 21-22, 2026
Indianapolis, Indiana
In person attendance is by invitation only.
Virtual registration is open to all. Please register here.
FLOW Hydrocephalus Research Symposium
July 23-25, 2026
Continue the conversation at the adjoining
FLOW Hydrocephalus Research Symposium at HA CONNECT.
Register here for HA CONNECT and FLOW.
See FAQ below for more information.
OBJECTIVE
We are bringing together our core physicians and scientists along with leaders from pharma and device companies to explore the needs and opportunities in hydrocephalus. Hydrocephalus is an underserved neurological condition with a larger patient population than previously recognized. Our goal is to show why hydrocephalus needs greater investment, innovation, and clinical engagement.
Participants will gain insight into the population size and therapeutic potential for this population. Hydrocephalus represents an open therapeutic and market opportunity with areas for investment. Neurologists, neurosurgeons, and other neuro specialists can play a role in expanding access to hydrocephalus diagnosis and treatment.
When:
July 21-22, 2026
Where:
JW Marriott Indianapolis
10 S West St
Indianapolis, IN 46204
Contacts:
Monica Chau, PhD- Chief Scientific Officer, HA (Research@hydroassoc.org)
Samantha Lanjewar, PhD- Research Programs Manager, HA (Samantha@hydroassoc.org)
Travel & Hotel
Indianapolis International Airport:
11.5 miles From JW Marriott Indianapolis
Visit Airport Website
Hotel Venue:
JW Marriott Indianapolis
10 S West St
Indianapolis, IN 46204
Childcare Stipends Available
We recognize that childcare responsibilities, particularly for parents of young children, can make it difficult to attend conferences. To give parents the opportunity to engage at the workshop, we are pleased to offer a childcare stipend.
For more information, please contact Monica Chau at research@hydroassoc.org.
Program
Arrival: Monday, July 20
Welcome Social
Date: July 20, 2026, 5:00-6:30pm
Location: JW Marriott Indianapolis, High Velocity
Join and network. All are welcome including trainees
As you arrive in Indianapolis, drop by to learn about:
- Hydrocephalus Association (HA) funding opportunities
- Academic funding opportunities from other organizations
- Collaborating with HA
- HA's research initiatives
- HA's research priorities & publications
- Network with HA leadership
Meet HA Leadership:
- Monica Chau, PhD- Chief Scientific Officer
- Diana Gray, MA- President and CEO
- Samantha Lanjewar, PhD- Research Programs Manager
- Linda Riley- Chief Development Officer
- Mike Siegel, PhD- Research Committee Chair, Board Member
- Yun Yung, PhD- Scientific Advisory Board Chair
Day 1: Tuesday, July 21
Session 1: Defining the Hydrocephalus Landscape
Times in the program are in Eastern Time, U.S.
8:00–9:00 AM Breakfast
Workshop Introduction
9:00–9:10 AM Monica Chau, PhD — Welcome & workshop goals, intended outcomes
9:10–9:20 AM Diana Gray, MA — Hydrocephalus Association mission and vision
9:20–9:30 AM Gordon McComb, MD — Rudi Schulte Research Institute overview and honoring Dr. Pollay
9:30–9:50 AM Heather Bruen — Keynote Speaker: Caregiver Perspective
Session 1: Defining the Hydrocephalus Landscape
What is the true scope of hydrocephalus, and why has it been underestimated?
Session Goal: Establish the size, heterogeneity, and data gaps of the hydrocephalus population across the lifespan
9:50–10:10 AM Tamara Simon, MD, MSPH — Current Data Sources, Gaps, & Opportunities: Why Hydrocephalus is Undercounted
10:10–10:30 AM Vijay Ravindra, MD — Pediatric hydrocephalus: population, etiology, healthcare utilization, and outcomes
10:30–10:50 AM Albert Isaacs, MD — Adult (non-iNPH) hydrocephalus: population diversity and secondary data analysis
10:50–11:10 AM Mats Tullberg, MD, PhD (virtual) — iNPH prevalence and incidence
11:10–11:30 AM Break
Session 2: Hydrocephalus as an Investment and Innovation Opportunity
Session 2: Hydrocephalus as an Investment and Innovation Opportunity
Session Goals
- Make the business and innovation case for hydrocephalus
- Clarify why hydrocephalus is an open therapeutic and investment opportunity
Market & Innovation Perspectives
11:30–11:50 AM Adam Zysk, PhD — Hydrocephalus as an Investable Market
11:50 AM–12:10 PM Charles Matouk, MD — Alternatives to Shunts: Pathways From Idea to Market
12:10–12:25 PM Jessica Forbes, PhD (virtual) — SBIR/STTR and Early-Stage Innovation
12:25–1:15 PM Lunch
1:15–1:30 PM Scott Olson, MBA — Nice to meet you: University innovation/tech transfer offices
1:30–2:20 PM Emerge Industry & Investor Panel
Panel Topic: Why Invest in Hydrocephalus and What Would Accelerate Progress?
Moderator: Scott Olson, MBA
Panelists: Large and small company reps; venture capital investors: Eric Heinz, MBA, Caitlin Morse, BA, Tim Hopper, MBA, Patrick Dugan, MBA
Key Topics:
• Barriers to investment
• What data industry needs (EMR, payer, outcomes)
• What the “next device or therapy” could be
• Primary Question: What is holding you back from greater investment and innovation?
Interactive Breakout Session: Barriers and Priorities for Investment
2:20–2:50 PM Breakout discussions
2:50–3:20 PM Full-group report-back
Purpose: Directly inform the priorities/roadmap white paper.
Breakout Focus Areas:
• Major barriers to investing in hydrocephalus research (clinical trial endpoints clarity, human evidence)
• Barriers to connecting medical needs to investors
• What different stakeholders need in order to invest
• Strategies to overcome these barriers
3:20–3:30 PM Break
Session 3: The Chronic Burden to Patients and Families
Session 3: The Chronic Burden to Patients and Families
Session Goals:
- Highlight quality of life, mental health, and long-term outcomes
- Elevate lived experience and unmet needs
3:30–3:50 PM Jay Riva-Cambrin, MD — Quality of Life After Shunting and ETV: The Present and the Future
3:50–4:10 PM Elizabeth McRae, PhD — Psychosocial Burden in Patients and Caregivers
4:10–4:55 PM Patient & Caregiver Panel
Moderator: Samantha Lanjewar, PhD
Panelists: Heather Bruen; Kenneth Iserson, MD; Susan Fiorella, MPP, MS; Kayla Gray, MS
Topics:
-
- Barriers to accessing care
- Diagnosis difficulties
- Hidden costs of hydrocephalus
4:55–5:00 PM Monica Chau, PhD — Day 1 Closing Remarks
Group Dinner
Group Networking Dinner
Join us for a special celebration!
All attendees are invited to join.
Date: July 21st, 6:30pm
Location: Skyline Club, One American Square, 36th floor, Indianapolis, IN 46204
Attire: Cocktail attire, business casual, or smart casual - feel free to dress festively for this special occasion
Day 2: Wednesday, July 22
Session 4: The Economic and System Burden of Hydrocephalus
8:00–9:00 AM Breakfast
8:50–9:00 AM Monica Chau, PhD — Welcome and opening remarks
Session 4: The Economic and System Burden of Hydrocephalus
Session Goals:
- Quantify healthcare system burden across the lifespan
- Show how complications and inefficiencies drive cost
- Set the foundation for access-to-care solutions
9:00–9:10 AM Casey Quinn, PhD — Framework: The patient centered value report
9:10–9:25 AM Casey Quinn, PhD — Patient-centered burdens & the healthcare system
9:25–9:45 AM Susan Fiorella, MPP, MS — Caregiver Burden and the Hidden Economics of Hydrocephalus
9:45–10:05 AM Abhay Moghekar, MBBS — Epidemiology of NPH and inpatient healthcare burden
10:05–10:25 AM Joseph Piatt, MD — Hydrocephalus Healthcare Use: How We Might Do Better with What We Already Know
10:25–10:45 AM Richard Xie, PhD — Health economics & public health framework
10:45–11:00 AM Break
11:00–11:40 AM Breakout Activity
Topics:
-What patient centered values are most important? Where are there gaps?
-What data do we have, and what data do we need to fulfill these areas, to understand the economic healthcare burden of hydrocephalus?
-What are next steps?
Session 5: Improving Access to Diagnosis and Care
Session 5: Improving Access to Diagnosis and Care
Session Goals:
- Identify barriers to access and how different players can take actionable steps
- Highlight scalable and realistic care models
Moderator: Michael A. Williams
11:40–11:55 AM Kenneth Iserson, MD — Patient perspective: diagnostic journey
11:55–12:15 PM Mark Hamilton, MDCM —Improving Diagnosis and Care in iNPH
12:15–12:35 PM Brandon Rocque, MD — Racial Disparities In Hydrocephalus: Mortality And Shunt Revision
12:35–1:30 PM Lunch
1:35–1:55 PM Bermans Iskandar, MD— How Advanced Practice Providers (APPs) Models Can Increase Access to Care
1:55–2:15 PM Ryan Lee, MD — Establishing Adult Hydrocephalus Centers
2:15 PM–3:00 PM Models of Care & Transition Panel
Moderator: Michael A. Williams, MD
Panelists: Bermans Iskandar, MD; Naomi Abel, MD; Sara Hartnett, MD; Mark Hamilton, MDCM; Ryan Lee, MD
Topics:
• APP-led care models
• Pediatric-to-adult transition
• Clinic sustainability and staffing
• Cost and system implications
3:00–3:15 PM Break
3:15–3:55 PM Breakout Session: Improving Access to Care
Breakout Focus:
• Issues in accessing care — systemic problems
• Priorities and next steps for improving access
• Patient access vs. shortage of adult hydrocephalus specialists
Breakout Options (participants choose one):
-
- Systemic and insurance-level barriers
- Patient-level access challenges
- Workforce shortages and how to expand adult specialty care
Goal:
Identify pragmatic solutions that address both access and workforce limitations simultaneously.
Session 6: Funding and Resources
Session 6: Funding and Resources
3:55–4:10 PM Jill Morris, PhD — Program Director, Division of Neuroscience at NINDS, NIH
4:10–4:25 PM Kathryn Argue, PhD (virtual) — Program Manager, Peer Reviewed Medical Research Program at CDMRP, Department of War
4:25–4:40 PM Casey Quinn, PhD — Senior Advisor, Patient-Centered Outcomes Research Institute (PCORI)
4:40–4:50 PM Samantha Lanjewar, PhD — Research Programs Manager, Hydrocephalus Association
Closing Remarks
4:50–5:00 PM Monica Chau, PhD — Key takeaways and next steps
5:00 PM End of Workshop
Frequently Asked Questions
Is the Research Workshop open to everyone?
No. The Research Workshop is invite-only to ensure focused discussion and meaningful participation.
Who attends the workshop? Who will I meet there?
This workshop brings together a diverse audience to foster cross-network collaboration.
You will meet:
- Neurosurgeons, neurologists, and other physicians
- Neuroscientists and other scientists
- Health economists
- Insurance companies
- Large and small industry companies
- Investors
- Government funders
- Device developers and engineers
- Students: academic and medical trainees
What is the difference between the Research Workshop, HA CONNECT, and the FLOW Hydrocephalus Research Symposium?
These are three distinct but connected events:
-
Research Workshop (July 21-22):
An invite-only, in-depth meeting held immediately before HA CONNECT at the same location. It brings together scientists, engineers, clinicians, industry reps, and select stakeholders to identify key challenges, align on research priorities, and shape the future direction of hydrocephalus research. Outcomes from the workshop typically inform a white paper outlining research priorities for the field. -
HA CONNECT – National Conference on Hydrocephalus (July 23-25):
The Hydrocephalus Association’s national conference brings together patients, caregivers, clinicians, researchers, industry partners, and advocates for education, networking, and community-driven programming. Visit our conference website to learn more.-
FLOW Hydrocephalus Research Symposium (during HA CONNECT):
A new, researcher-focused symposium embedded within HA CONNECT. FLOW sessions run concurrently with other conference programming and are designed specifically for researchers to share and discuss scientific advances in hydrocephalus. Submit your abstract to present here.
-
Questions? Contact the Research Programs Manager, Dr. Samantha Lanjewar (Samantha@hydroassoc.org)
How can I present my research?
The research workshop will have invited speakers only.
If you would like to present your research, there are multiple opportunities at HA CONNECT, including the:
-
FLOW Hydrocephalus Research Symposium sessions: flash talks and poster presentations
-
Next Generation Sessions (for trainees only): oral and poster presentations
Submit your abstract here: hands.hydroassoc.org/ha-connect-2026-abstract-submission. Abstract submission are due by March 13.
Questions? Contact the Research Programs Manager, Dr. Samantha Lanjewar (Samantha@hydroassoc.org)
How do I register if I am attending both the Research Workshop and HA CONNECT?
You must register separately for each event.
-
Research Workshop:
There is no registration fee, but invited participants must register using this form. -
HA CONNECT:
Conference registration is required. Register here: hydrocephalusconference.org/researcher-registration. Researcher registration includes access to the FLOW Hydrocephalus Research sessions.
Questions? Contact the Research Programs Manager, Dr. Samantha Lanjewar (Samantha@hydroassoc.org)
Where should I book my hotel?
All attendees, whether attending the Research Workshop, HA CONNECT, or both, must book their hotel through the official conference hotel link to receive the group rate: hydrocephalusconference.org/conference-hotel. This includes all workshop speakers and those who submit an abstract to HA CONNECT.
Exception: if you are an invited HA CONNECT conference speaker, do not book your own room; HA staff will book it for you.
Hotel reservations must be made by Monday, June 29, 2026, at 5:00 pm ET.
Which events should I attend?
Each event offers a distinct experience and value:
- Research Workshop: Provides a small, focused setting for invited participants to help shape research priorities, influence how the hydrocephalus field moves forward, and contribute to outcomes such as a published white paper that guides future hydrocephalus research.
- FLOW Hydrocephalus Research Symposium: Offers researchers the opportunity to learn about the latest scientific advances, network with peers, and present their work within a dedicated, research-focused environment during HA CONNECT.
- HA CONNECT: Brings together the full hydrocephalus community—patients, caregivers, clinicians, researchers, and industry partners—to share knowledge, build connections, and gain a broader understanding of community needs and emerging solutions.
Questions? Contact the Research Programs Manager, Dr. Samantha Lanjewar (Samantha@hydroassoc.org)
Resources
Funding Opportunities
- The Hydrocephalus Association has put together a list of funding opportunities from other agencies. This list is not exhaustive, but we hope it is a helpful resource to find funding for hydrocephalus research.
Hydrocephalus Events
What is the FLOW Research Symposium? It is a first-of-its-kind symposium at the National Conference on Hydrocephalus, HA CONNECT, featuring research presentations on hydrocephalus treatment, devices, diagnosis, neuropsychology, and basic science. These topics are based on patient-driven research priorities, allowing researchers to address the most pressing needs for those living with hydrocephalus.
FLOW Research Symposium Events:
- 2 FLOW Research Symposium Sessions
- Poster Session(s)
- Trainee Social Hour- All trainees are welcome including medical, graduate, undergraduate students, residents, and fellows.
- Engineering Social Hour- Open to everyone working in engineering and devices for hydrocephalus
- Events are exclusive to researchers
- Research program here
HA CONNECT- National Conference on Hydrocephalus
July 23-25, 2026, Indianapolis, IN
Relevant Publications & Materials
Special Thanks
Program Planning Committee
Chair: Jay Riva-Cambrin, MD
Naomi Abel, MD
Mark Hamilton, MDCM
Olivia Hogue, PhD
Albert Isaacs, MD
Rosie McStay, MPH
Abhay Moghekar, MBBS
Daniela Perez Chadid, MD
Joseph Piatt, MD
Brandon Rocque, MD
Tamara Simon, MD
