Insights into NIH Funding of Hydrocephalus Research. Paul Gross Chairman, Hydrocephalus Association

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Insights into NIH Funding of Hydrocephalus Research Paul Gross Chairman, Hydrocephalus Association

Public Funding Landscape Totals, Categories, Institutes and Types Trends over time Discussion

Method Searched RePORTER with keyword hydrocephalus over period Reviewed all abstracts for relevance Checked edge cases with research advisors Consulted NIH regarding any gaps / questions Categorized scientific approach Tabulated, charted and analyzed results in XL

Total Spending 2002-2011 NIH with stimulus: $54,056,677 ARRA funding portion: $2,503,534 Funding less ARRA: $51,553,143* 59 grantees received 66 unique awards Only one hydrocephalus PA exists There is also one NICHD brain development PA that is very applicable * NINDS does not include ARRA funding in its portfolio analysis

NIH Hydrocephalus Spending by Category $30,000,000 $25,000,000 $20,000,000 $15,000,000 $10,000,000 $5,000,000 $- Basic Science CSF dynamics Clinical(patientbased) Cognitivebehavioral Shunt device development Other device development 2002-2011 $9,088,014 $4,896,398 $25,117,186 $1,843,638 $9,935,552 $2,929,013

NIH Hydrocephalus Spending by Institute 30000000 25000000 20000000 15000000 10000000 5000000 0 NINDS NICHD NIBIB NIA NIMH OD NCRR NHLBI NIAID NIDDK NIEHS

Institutions Awarded > $1 MM GEORGE WASHINGTON UNIVERSITY $ 7,145,134 MOMS CHILDRENS HOSPITAL OF PHILADELPHIA $ 5,667,592 MOMS UNIVERSITY OF CALIFORNIA SAN FRANCISCO $ 5,002,538 MOMS+ Training VANDERBILT UNIVERSITY $ 4,276,221 MOMS NATIONAL INSTITUTE OF ENVIRONMENTAL HEALTH SCIENCES Basic Science on genes $ 3,882,788 and brain development UNIVERSITY OF CALIFORNIA LOS ANGELES $ 2,379,118 Shunts / ICP NEURODX DEVELOPMENT, LLC $ 2,306,402 Shunts CLEVELAND CLINIC LERNER COL/MED-CWRU $ 2,197,334 CSF Dynamics AFFINERGY,INC $ 2,083,120 Shunts NEW YORK UNIVERSITY SCHOOL OF MEDICINE Clinical Core for Longitudinal Study (NPH tracked $ 1,998,577 otherwise minor) INFOSCITEX CORPORATION $ 1,461,623 Shunts MASSACHUSETTS GENERAL HOSPITAL Basic Science on CSF $ 1,424,228 and Choroid Plexus CSF Dynamics with CHILDREN'S HOSPITAL MEDICAL CENTER CINCI $ 1,358,206 Imaging H-CUBED, INC. $ 1,326,417 Shunts RHODE ISLAND HOSPITAL UNIVERSITY OF UTAH $ 1,275,060 Basic and CSF Dynamics $ 1,206,548 Clinical (HCRN), Training, Conference UNIVERSITY OF MIAMI SCHOOL OF MEDICINE $ 1,168,695 Basic and Cognitive UNIVERSITY OF CHICAGO $ 1,152,191 Cognitive

Spending by Grant Types $25,000,000 $20,000,000 $15,000,000 $10,000,000 $5,000,000 $- Research Projects SBIR-STTR Research Centers Career; Training; Individual; Intramural Research Clinical Trials Series1 $15,744,180 $10,055,385 $2,152,830 $2,278,380 $3,882,788 $22,045,944

Overall Funding Analysis Total funding is low based on prevalence / burden compared to other conditions over last four years -- $30M over four years v. Parkinson s Disease: $629M Epilepsy: $559M MOMS trial is nearly 50% of expended funds Devices take second place with 24% of funds Limited training / career awards NINDS and NICHD are the only players

Millions Total NIH Hydrocephalus Spending 2002-2011 $25 $20 $15 $10 $5 $- 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011

Millions NIH Hydrocephalus Funding with MOMS Differentiated $25 $20 $15 $10 MOMS Other $5 $0 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011

Grant Activity 30 25 20 15 Non Competing Grants New Grants 10 5 0 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011

NIH Hydrocephalus Spending by Institute Over Time $6,000,000 $5,000,000 $4,000,000 $3,000,000 $2,000,000 $1,000,000 NINDS NICHD NIBIB NIA NIMH OD NCRR NHLBI NIAID NIDDK NIEHS $- 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011

NIH Hydrocephalus Spending by Category $5,000,000 $4,500,000 $4,000,000 $3,500,000 $3,000,000 $2,500,000 $2,000,000 $1,500,000 Basic Science CSF dynamics Clinical(patient-based) Cognitive-behavioral Shunt device development Other device development $1,000,000 $500,000 $- 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011

Trend Analysis Funding declines due ARRA and MOMS wrap-up NINDS is assuming the leadership role in hydrocephalus funding SBIRs and Devices are the key new program PA s definitely drive scientific submissions Approximately four to seven NEW grants per year Extrapolated from paylines, there are 27-47 new grant applications per year but More likely 15-20 based on SBIR paylines and grant mix There are not many hydrocephalus researchers!

Discussion There have been no fundamental advances in years and you can see why! Need help in growing ecosystem Difficult to study, significant public health cost but we aren t doing enough. Need help getting scientists interested. Basic Science, clinical research and careers appear under funded What should we fund? Potential areas of research that are broader than hydrocephalus but that would be leveraged Brain injury, brain development, CSF disorders