ICARE Epilepsy Research Portfolio Analysis...The ICARE Epilepsy portfolio analysis working group Jan...

23
ICARE Epilepsy Research Portfolio Analysis ICARE meeting April 13, 2015

Transcript of ICARE Epilepsy Research Portfolio Analysis...The ICARE Epilepsy portfolio analysis working group Jan...

Page 1: ICARE Epilepsy Research Portfolio Analysis...The ICARE Epilepsy portfolio analysis working group Jan Buelow, EF David Eckstein, NCATS, NIH Margaret Jacobs, AES Mary Anne Meskis, Dravet

ICARE Epilepsy Research Portfolio Analysis

ICARE meeting April 13, 2015

Page 2: ICARE Epilepsy Research Portfolio Analysis...The ICARE Epilepsy portfolio analysis working group Jan Buelow, EF David Eckstein, NCATS, NIH Margaret Jacobs, AES Mary Anne Meskis, Dravet

Goals for a comprehensive analysis

• to better inform the ICARE group and interested public about the fundinglandscape for epilepsy research

• to assess progress being made against the epilepsy research priorities asdefined by the 2014 NINDS Benchmarks and the recommendations from the 2012 IOM report “Epilepsy Across the Spectrum”.

• to help guide future funding priorities by highlighting current gaps andopportunities in epilepsy research

Page 3: ICARE Epilepsy Research Portfolio Analysis...The ICARE Epilepsy portfolio analysis working group Jan Buelow, EF David Eckstein, NCATS, NIH Margaret Jacobs, AES Mary Anne Meskis, Dravet

Analysis Design

• A working group was established to set the goals and design of the analysis

• Data was collected in four different areas:1. Award Information

project, investigator(s), award type and amount 2. Award Research Categories

research classification, type, and epilepsy type 3. NINDS 2014 Benchmark Areas4. IOM 2012 Recommendations

• All ICARE member organizations categorized their funded epilepsyresearch according to the four areas.

• Data contributed by: NIH, CDC, VA, PCORI, CURE, TS Alliance, AES, EF, andELC (Dravet Syndrome Foundation, Phelan-McDermid Syndrome Foundation and PCDH19 Alliance).

Page 4: ICARE Epilepsy Research Portfolio Analysis...The ICARE Epilepsy portfolio analysis working group Jan Buelow, EF David Eckstein, NCATS, NIH Margaret Jacobs, AES Mary Anne Meskis, Dravet

The ICARE Epilepsy portfolio analysis working group

Jan Buelow, EF David Eckstein, NCATS, NIH Margaret Jacobs, AES Mary Anne Meskis, Dravet Foundation – ELC Julie Milder, CURE Rob Moss, Seizure Tracker – ELC Steve Roberds, TSA

Tom Cheever, NINDS Brandy Fureman, NINDS Miriam Leenders, NINDS

Page 5: ICARE Epilepsy Research Portfolio Analysis...The ICARE Epilepsy portfolio analysis working group Jan Buelow, EF David Eckstein, NCATS, NIH Margaret Jacobs, AES Mary Anne Meskis, Dravet

Federal Funding Dramatically Outpaces Non-profit Funding for Epilepsy Research

Federal 95%

Nonprofit 5%

Page 6: ICARE Epilepsy Research Portfolio Analysis...The ICARE Epilepsy portfolio analysis working group Jan Buelow, EF David Eckstein, NCATS, NIH Margaret Jacobs, AES Mary Anne Meskis, Dravet

Federal vs Nonprofit Funding for Epilepsy Research in 2013 (total funding $148.9M)

Funding Agency/Organization Number of projects Total Funding

NIH 393 $136,385,334 CURE 41 $4,285,114 VA 15 $2,325,000 CDC 10 $2,212,135 PCORI 2 $1,684,562 EF 15 $730,000 AES 17 $547,500 Dravet Syndrome Foundation 6 $435,500 Tuberous Sclerosis Alliance 6 $174,322 Phelan-McDermid Syndrome Foundation 1 $50,000 PCDH19 Alliance 1 $30,000

Grand Total 507 $148,859,467

Page 7: ICARE Epilepsy Research Portfolio Analysis...The ICARE Epilepsy portfolio analysis working group Jan Buelow, EF David Eckstein, NCATS, NIH Margaret Jacobs, AES Mary Anne Meskis, Dravet

NINDS Supports Large Majority of NIH Funding

NINDS 80%

NIH-OD 6%

NCATS 4%

NHLBI 3%

NICHD 2%

NIDA 2% NIBIB

1%

NIAAA 1%

NIA 1%

Page 8: ICARE Epilepsy Research Portfolio Analysis...The ICARE Epilepsy portfolio analysis working group Jan Buelow, EF David Eckstein, NCATS, NIH Margaret Jacobs, AES Mary Anne Meskis, Dravet

CURE Supports Large Majority of Epilepsy Leadership Council (ELC) Funding

CURE 68%

EF 12%

AES 9%

Dravet Syndrome Foundation

7%

Tuberous Sclerosis Alliance

3%

Phelan-McDermid Syndrome Foundation

1%

PCDH19 Alliance

0.5%

Page 9: ICARE Epilepsy Research Portfolio Analysis...The ICARE Epilepsy portfolio analysis working group Jan Buelow, EF David Eckstein, NCATS, NIH Margaret Jacobs, AES Mary Anne Meskis, Dravet

81% of investigators have 1 project; 15% have 2 projects, 2% have 3, 1% have 4 and 1% have 5. 5% of investigators received >$1M in funding in FY2013

507 projects - 408 Investigators

Most Investigators are Supported by a Single Project

Page 10: ICARE Epilepsy Research Portfolio Analysis...The ICARE Epilepsy portfolio analysis working group Jan Buelow, EF David Eckstein, NCATS, NIH Margaret Jacobs, AES Mary Anne Meskis, Dravet

Most Funded Epilepsy Research is Basic

BASIC 53%

CLINICAL 28%

TRANSLATIONAL 19%

Page 11: ICARE Epilepsy Research Portfolio Analysis...The ICARE Epilepsy portfolio analysis working group Jan Buelow, EF David Eckstein, NCATS, NIH Margaret Jacobs, AES Mary Anne Meskis, Dravet

Most Funded Epilepsy Research is on Mechanism of Disease or Treatment

Mechanism of Disease

39%

Treatment 29%

Early Detection/ Diagnosis/ Prognosis

11%

Etiology 9%

Outcomes 5%

Model Systems 5% Prevention

2%

Page 12: ICARE Epilepsy Research Portfolio Analysis...The ICARE Epilepsy portfolio analysis working group Jan Buelow, EF David Eckstein, NCATS, NIH Margaret Jacobs, AES Mary Anne Meskis, Dravet

Largest Fraction of Funding goes to Research on Mechanism of Disease; Smallest to Prevention

0% 20% 40% 60% 80% 100%

Mechanism of Disease

Treatment

EarlyDetection/Diagnosis/…

Etiology

Model Systems

Outcomes

PreventionBasic

Translational

Clinical

$3.4M

$11.8M

$9.9M

$14.3M

$19.6M

$48.7M

$62.5M

Page 13: ICARE Epilepsy Research Portfolio Analysis...The ICARE Epilepsy portfolio analysis working group Jan Buelow, EF David Eckstein, NCATS, NIH Margaret Jacobs, AES Mary Anne Meskis, Dravet

Funding for Structured Training in Epilepsy Research is a Small Percentage of Overall Funding

Research 86%

Resources and

Infrastructure 8%

Training & Career

Development 6%

Educational Support

0.03%

Page 14: ICARE Epilepsy Research Portfolio Analysis...The ICARE Epilepsy portfolio analysis working group Jan Buelow, EF David Eckstein, NCATS, NIH Margaret Jacobs, AES Mary Anne Meskis, Dravet

Funding for Structured Training is Provided by a Subset of Organizations

0% 50% 100%

CDC

PCORI

Dravet…

Phelan-…

PCDH19 Alliance

TS Alliance

EF

VA

AES

CURE

NIH

Educational Support

Research

Resources and Infrastructure

Training & CareerDevelopment

6% ($6.9M)

15% ($0.65M)

65% ($0.36M)

10% ($0.23M)

18% ($0.14M)

19% ($0.03M)

Training and Career Development investment

Page 15: ICARE Epilepsy Research Portfolio Analysis...The ICARE Epilepsy portfolio analysis working group Jan Buelow, EF David Eckstein, NCATS, NIH Margaret Jacobs, AES Mary Anne Meskis, Dravet

$0 $1 $2 $3 $4 $5

EarlyDetection…

Etiology

Mechanismof Disease

ModelSystems

Outcomes

Treatment

Millions

Basic

Translational

Clinical

Majority of Training and Career Development Awards Support Basic Research

Investment of training awards by Research Classification and Type

Degree # of

trainees PHD 48

MD, PHD 18

MD 14

MS 3

BS 7

other 2

Degrees of training awardees

Page 16: ICARE Epilepsy Research Portfolio Analysis...The ICARE Epilepsy portfolio analysis working group Jan Buelow, EF David Eckstein, NCATS, NIH Margaret Jacobs, AES Mary Anne Meskis, Dravet

0%

1%

2%

3%

4%

5%

6%

7%

8%

9%

10%

$0

$1

$2

$3

$4

$5

$6

$7

$8

$9

$10

% o

f tot

al fu

ndin

g

K a

war

ds (

M)

NIH RCDC Epilepsy category K-award funding

NIH Epilepsy Career Development Award Funding Decrease Between FY2008 – FY2013

Page 17: ICARE Epilepsy Research Portfolio Analysis...The ICARE Epilepsy portfolio analysis working group Jan Buelow, EF David Eckstein, NCATS, NIH Margaret Jacobs, AES Mary Anne Meskis, Dravet

2008 2013

NIH RCDC Disease Category

K awards (M $)

% of total ($)

K awards (M $)

% of total ($)

Epilepsy $9.1 6.3% $5.7 4.4%

Stroke $11.6 3.9% $9.9 3.5%

Parkinson's $6.0 4.0% $5.6 4.1%

Brain Cancer $5.1 2.6% $6.1 2.2%

Multiple Sclerosis $5.0 3.0% $3.0 2.7%

ALS $0.9 2.1% $1.1 2.8%

Autism $4.1 3.5% $5.3 2.9%

NIH RCDC disease categories K-award funding

NIH Epilepsy Career Development Award Funding Decreased More Compared to Other Diseases

Page 18: ICARE Epilepsy Research Portfolio Analysis...The ICARE Epilepsy portfolio analysis working group Jan Buelow, EF David Eckstein, NCATS, NIH Margaret Jacobs, AES Mary Anne Meskis, Dravet

Active K award in FY 2008,2009 or 2010, and the award has ended before 2015. # of awardees % of awardees

NS Epilepsy K-awardees 53

applied for R01 funding 38 72% awarded R01 funding 29 55%

project focused on Epilepsy 22 76% of R01s

NIH R01 funding obtained by NS Epilepsy K Awardees

Page 19: ICARE Epilepsy Research Portfolio Analysis...The ICARE Epilepsy portfolio analysis working group Jan Buelow, EF David Eckstein, NCATS, NIH Margaret Jacobs, AES Mary Anne Meskis, Dravet

13% 6% 19% 37% 25%

100%

100%

4% 1% 95%

100%

25% 16% 11% 36% 12%

6% 3% 90%

59% 41%

18% 14% 68%

19% 32% 48%

40% 1% 6% 36% 17%

12% 5% 20% 37% 25% NIH

AES

Dravet F

EF

PCDH19

Phelan-M

TSA

CURE

VA

Total

CDC

PCORI

Neonatal/ Infantile

Childhood Adolescent/ Adult

Variable Age

Type not specified

Disparities in Funding for Different Epilepsy Types

Age of onset:

Page 20: ICARE Epilepsy Research Portfolio Analysis...The ICARE Epilepsy portfolio analysis working group Jan Buelow, EF David Eckstein, NCATS, NIH Margaret Jacobs, AES Mary Anne Meskis, Dravet

Research on the Causes and Consequences of Epilepsy Receives Less Funding

I. Understand the causes

21%

II. Prevent epilepsy and its

progression 29%

III. Improve treatment

options 34%

IV. Limit or prevent adverse consequences

11% N/A 5%

Page 21: ICARE Epilepsy Research Portfolio Analysis...The ICARE Epilepsy portfolio analysis working group Jan Buelow, EF David Eckstein, NCATS, NIH Margaret Jacobs, AES Mary Anne Meskis, Dravet

Area I (causes)

A B C D

Area II (epileptogenesis)

A B C D E

Area III (treatment)

A B C D E F G

Area IV (consequences) A B C D E

NIH

AES

Dravet F

EF

PCDH19

Phelan-M

TSA

CURE

VA

Disparities in Funding across Benchmark Areas

10.4% 5.3% 0.9% 3.4% 10.5% 17.5% 1.8% 1.0% 2.0% 4.6% 0.6% 2.8% 23.5% 2.9% 0.1% 6.6% 3.0% 1.2% 2.0%

3.8% 4.1% 6.7% 12.1% 4.9% 4.8% 16.9% 2.8% 4.8% 4.3% 25.5% 1.2% 8.2%

7.4% 2.8% 2.1% 1.5% 5.3% 11.4% 3.4% 14.0% 6.7% 6.0% 14.6% 6.5% 7.8% 3.5% 3.5% 3.5%

2.3% 4.0% 13.5% 2.3% 3.4% 8.2% 5.6% 57.4% 3.4%

21.3% 8.5% 15.3% 20.4% 8.1% 1.7% 1.7% 6.8% 4.3% 8.5% 3.4%

15.4% 6.2% 1.9% 21.6% 3.8% 14.4% 2.5% 15.4% 10.6% 3.8% 2.5% 1.9%

30.2% 17.1% 10.7% 38.9% 1.6% 1.6%

16.7% 16.7% 16.7% 16.7% 16.7% 16.7%

100.0%

10.2% 5.2% 1.0% 3.4% 10.1% 17.1% 2.0% 1.3% 2.6% 4.5% 0.6% 2.9% 22.7% 3.7% 0.0% 0.1% 6.3% 2.9% 0.1% 1.4% 1.9% Total

Page 22: ICARE Epilepsy Research Portfolio Analysis...The ICARE Epilepsy portfolio analysis working group Jan Buelow, EF David Eckstein, NCATS, NIH Margaret Jacobs, AES Mary Anne Meskis, Dravet

Little Funding Dedicated to 2012 IOM Recommendations

yes 4%

no 96%

1 2%

2 34%

3 35%

4 7%

5 10%

7 0.1% 9

12%

1. Validate and Implement Standard Definitions and Criteria for Epilepsy Case Ascertainment, Health Care and Community Services Use and Costs, and Quality-of-Life Measurement

2. Continue and Expand Collaborative Surveillance and Data Collection Efforts

3. Develop and Evaluate Prevention Efforts for Epilepsy and Its Consequences

4. Improve the Early Identification of Epilepsy and Its Comorbid Health Conditions

5. Develop and Implement a National Quality Measurement and Improvement Strategy for Epilepsy Care

7. Improve Health Professional Education About the Epilepsies 9. Improve and Expand Educational Opportunities for People with Epilepsy and Their Families

Page 23: ICARE Epilepsy Research Portfolio Analysis...The ICARE Epilepsy portfolio analysis working group Jan Buelow, EF David Eckstein, NCATS, NIH Margaret Jacobs, AES Mary Anne Meskis, Dravet

1) Epilepsy research funding spans a range of organizations with different missions and funding capacity

2) Federal funding significantly outpaces nonprofit research funding

3) Funding from federal sources is highly concentrated at NIH

4) Limited Support for structured training in epilepsy research; is this sufficient?

5) Epilepsy research funding is unevenly distributed among the Epilepsy Benchmark priorities

6) Epilepsy research funding for IOM Research Recommendations is very limited.

Conclusions from 2013 Funding Data