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Early Case Capture (ECC) of Pediatric and
Young Adult Cancer (PYAC) Cases in
Louisiana: Challenges and Achievements
Ian Landry, MPH
Mary Anne Lynch, MPH
Mei-Chin Hsieh, MPH, CTR
Xiao-Cheng Wu, MD, MPH
Vivien W. Chen, PhD
Outline
 ECC Study, PYAC Continuing Grant
 ECC Challenges
 Solutions/Achievements
ePath Acquisition/Enhancement
Clinical Cases
Out of State Cases
 Conclusion
 Next Steps …
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Caroline Pryce Walker Act (2008)
 Advance medical research and treatment of
pediatric cancers
 Ensure patient/family access to current
information about cancer and treatment
 Establish national childhood cancer registry
(CDC-ECC Study)
Build infrastructure of participating registries to
track epidemiology of pediatric malignancies
Ascertain incident cases within weeks of
diagnosis
 Promote public awareness and data use
ECC-CDC Study
 (9/30/2011 – 9/29/2014) – 3 years
 CA, KY, LA, MN, NE, NY, OK – 7 registries
 LTR Goals:
 Build infrastructure of central registries funded
by NPCR
Facilitate rapid reporting (within 30 days) ePath
Expand relationships with health care facilities
Sustain early case capture (ECC)activities
Increase availability of pediatric data for public
use
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DP14-1402, Continuing Grant
Diagnosis Years: 9/2014 – 9/2018
KY, LA, MN, NE, NY, RI, WI – 7 registries
LTR Goals:
Finalize infrastructure
Address challenges from previous ECC grant
Amend/Revise registry laws to leverage ECC
expectations
Sustain PYAC activities
Obtain cases within 30 days of diagnosis
Incidence of PYAC Cases in LA
2008 - 2012
300
250
240
252
233
251
231
233
205
200
150
100
50
0
2008
2009
2010
2011
2012
2013
2014
As of 3/12/15
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ePath
 LA continues to receive a large percentage of all registry
cases via ePath(92%)
 Receive microscopically confirmed cases in “real time”
 Timely consolidation with expected ECC variables
 Leveraged registry legislative rules to include the timely
reporting of pathology via electronic records within 30
days
 Key Demographics are missing from ePath
 ADT feed increases “real time” completion of PYAC
variables on pathology reports
 Major Children’s Hospital in New Orleans went from 100%
Unknown Address to 2% Unknown
Clinically Diagnosed
 Still a challenge for timeliness
 No pathology report at initial diagnosis
 Subsequent biopsy/surgery (ePath) occurs months to years
after initial clinical diagnosis date
 Nature of some CNS tumors allows “watchful waiting” to be a
valid treatment option
 27% of LA ECC cases are CNS (193/719)
 2nd only to Leukemia in pediatric incidence
MRI showing benign brain tumor
activity
 Children outside of New Orleans metropolitan area, likely
referred out of state (SJCRH, Texas)
 In-state cases diagnosed at regional facilities are not
identified until full NAACCR abstract
 6 – 9 months after diagnosis
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Solutions to Clinical Dilemma
Legislative Rules
In-State Cases
St Jude Affiliates
E-Radiation
Software
Revised for
reporting within 30
days via electronic
source
Monthly screening
of Disease Index at
3 clinics
Ochsner sending
test messages with
AIM
Children’s Hospital
will begin testing
after IT system
upgrades this year
Solutions to Clinical Dilemma
St Jude’s
Out of State
Cases
Monthly
submissions to
each state (CDC)
Ongoing effort to
pilot monthly
submissions (CDC)
MD Anderson
New director of
MR has PUBH
background
Texas
Children’s/Baylor
Current IRB allows
for electronic
submissions to LTR
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Overall Timeliness of all ECC States by
Diagnosis Year
Castine Clerkin, CDC
Louisiana Timeliness Measures,
2012-2014 Cases
# Cases in
Denominator
0 – 30 days
#/%
0-60 days
#/%
0-120 days
#/%
2012
248
59 / 24%
35 / 38%
31 / 50%
2013
222
101 / 46%
37 / 62%
22 / 72%
Est 2014
205
166 / 81%
18 / 90%
7 / 93%
MC Hsieh 2015
*Timeliness reported is estimated before April 30th Submission to CDC
Note: % are cumulative for each time period
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Conclusion
Significant Accomplishments
ePath
Manual screening is burdensome;
electronic reporting is goal for all states
because of sustainability
Revised legislative rules
ADT feed increases “real time”
completion of PYAC variables on
pathology reports
Conclusion
Clinical Cases
Monthly screening at major children’s facilities
Catch cases before they are referred to out of
state major children’s hospitals
St Jude monthly reporting
Ensure cases are captured before the full
NAACCR abstract (albeit outside the 30 days)
E-Rad testing in progress at major facilities
AIM software generates possible reports to be
screened for ECC eligibility
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Conclusion
Our solutions not only address the CDC’s
goals, but are sustainable
Registry laws
ePath implemented at overwhelming
majority of LA facilities
ERad next step in sustainable case-finding
from imaging sources
Out of State relationships garner
continued case capture
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Moving forward…
 Fast, near “real time” pediatric incidence
estimate
Major goal is to provide timely incidence
data for researchers & parents that are not 3
year old SEER data
 Data use
Small numbers in LA make ECC database
less attractive than COG, and with less
treatment variables for researchers
No pediatric cancer clusters in LA to
investigate (NY uses this aspect for data use)
Acknowledgements
 This work is supported in part by the Centers of
Disease Control & Prevention (CDC) ECC
Cooperative Agreement(s) #1U58DP003805,
#1U58DP005390
 The authors are grateful to the LTR Central
Office and Regional staff for data collection
 Disclaimer:
The findings and conclusions of this
presentation are those of the authors and do
not represent the official position of CDC or LSU.
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Questions?
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