1. Survivor Introductory Comments Frame EAO-CRC 2019
2. Progress 2018
3. Applying EAO-CRC 2019 to Reducing Young Adult CRC Incidence and
Mortality
Thomas Weber, MD FACS
Professor of Surgery and Epidemiology
Donald & Barbara Zucker School of Medicine at Hofstra / Northwell
Director, Surgical Oncology, Northwest Region
Northwell Health, NY, USA

1. Survivor Introductory Comments Frame EAO-CRC 2019
2. Progress 2018
3. Applying EAO-CRC 2019 to Reducing Young Adult CRC Incidence and
Mortality
Thomas Weber, MD FACS
Professor of Surgery and Epidemiology
Donald & Barbara Zucker School of Medicine at Hofstra / Northwell
Director, Surgical Oncology, Northwest Region
Northwell Health, NY, USA

1. Survivor Introductory Comments Frame EAO-CRC 2019
2. Progress 2018
3. Applying EAO-CRC 2019 to Reducing Young Adult CRC Incidence and
Mortality
• Survivor Survey Results
• NCCRT Risk Assessment Tool Kit : Implementation Progress
• Report on the NCCRT, Colon Cancer Foundation, EIF Bethesda
Strategic Retreat. Jan Lowery PhD.
• American Cancer Society Revised (Earlier Age) CRC Screening
Guidelines. Robert Smith, PhD ACS
• NCI and International funded EAO Research Initiatives
• Novel Causation Research Initiatives
• EAO-CRC 2019 Action Plan & Network

1. Survivor Introductory Comments Frame EAO-CRC 2019
2. Progress 2018
3. Applying EAO-CRC 2019 to Reducing Young Adult CRC Incidence and Mortality
• A Strategic Shift! A Change in Tone.
• EAO-CRC 2019 as a Road Map / Blue Print for Action & Progress.
• As You Review Each Section of the Program; You Can See; Each of the Primary Components of an
Effective, Successful EAO-CRC Prevention, Earliest Possible Diagnosis, Optimal Fertility Preserving
Treatment and Causation Research Program are Presented.
• An Academic Step Up: Submission, Review and Presentation of Original Research Posters. Susan
Peterson PhD
• You will also see in your folders the “National Clinical Alert: Young Adult Colorectal Cancer”. A set of
Guidelines for Providers, Institutions and Health Care Systems to Use to Effectively Address the EAO-CRC
Problem. This document “Alerts” Providers to the EAO-CRC problem and provides clear guidance on how
to effectively address the problem and save lives. Presented By Drs. Albert, Boet, Jones and Erin
Peterson. This will be published and promoted nationally / internationally
• There will also be a Published Report of the proceedings of EAO-CRC 2019.
• We will launch the EAO-CRC Action NetworkTM
• Pretty much everything YOU, Your Hospital and the NATION needs to organize an effective EAO-CRC
Prevention, Earliest Possible Diagnosis, Age Appropriate Treatment and Causation Research Program is
outlined here.
• So, take notes, ask questions, go forth and do what needs to be done and stay in touch! There is
strength and increased probability of success in numbers.

57

58
ACCREDITATION
This live activity has been planned and implemented in
accordance with the Essential Areas and Policies of the
Accreditation Council for Continuing Medical Education through
the joint sponsorship of Northwell Health and The Colon Cancer
Foundation. Northwell Health is accredited by the Accreditation
Council for Continuing Medical Education to provide Continuing
Medical Education for physicians.
CREDIT DESIGNATION
Northwell Health designates this live Educational activity for a
maximum of 11.0 AMA PRA Category I credits TM. Physicians
should only claim credit commensurate with the extent of their
participation in the activity.
Northwell Health

59
SIGN-IN
To receive either CME or Verification of Attendance
Certificates, you must sign in at the registration desk.
Please make sure to verify your correct email address.
Please note that if you leave early, you can only claim
credit for the number of hours you actually attend.

60
EVALUATIONS AND
OUTCOMES SURVEY
Evaluations and the 3 month post activity outcomes
survey for this activity will be conducted through Survey
Monkey. Please look for the email that will have the link to
the survey. Your cooperation in completing the survey in a
timely manner will be appreciated. Once the evaluation is
completed, you will be routed to your CME certificate.
Please be sure that you have provided the correct email
address for the survey.

61
DISCLOSURE POLICY
Northwell Health adheres to the ACCME’s Standards for
Commercial Support. Any individuals in a position to control
the content of a CME activity, including faculty, planners,
reviewers or others are required to disclose all financial
relationships with commercial interests. All relevant conflicts
of interest will be resolved prior to the commencement of
the activity.

62
FACULTY DISCLOSURES
The following faculty, moderators, planners and managers have nothing to disclose:
NAME ROLE IN ACTIVITY
Andrew Albert MD, MPH Presenter
Irit
Ben-
Aharon MD, PhD Presenter
Semir Beyaz PhD Presenter
Chelsea Boet MD Presenter
Jennifer Brown PhD Presenter
Yin Cao MPH, ScD, MPH Presenter
Tabitha Cavanagh Presenter
Andrea Cercek MD Presenter
Zana Correa NP Presenter
Sarah Debord Presenter

63
FACULTY DISCLOSURES
The following faculty, moderators, planners and managers have nothing to disclose:
NAME ROLE IN ACTIVITY
James T. D'Olimpio
MD, FACP,
FAAHPM Moderator
Cathy Eng
MD, FACP,
FASCO Presenter
Andy Eshe MD, MBA Presenter
Karen Fasciano PsyD Presenter
Gregory Feero MD, PhD Moderator
Tony Foleno Presenter
Kevin Hays DDS, PhD, MPH Presenter
Richard Hayes Presenter
Wes Hensel MD Presenter
Steven H. Itzkowitz MD Presenter

64
FACULTY DISCLOSURES
The following faculty, moderators, planners and managers have nothing to disclose:
NAME ROLE IN ACTIVITY
Whitney Jones Moderator
Jordan Karlitz Presenter
Noah D Kauff Moderator
Sayoni Lahiri MS, CGC Presenter
Xavier Llor MD, PhD Presenter
Jan Lowery PhD Presenter
Christine L. Molmenti PhD, MPH Presenter
Kimmie Ng MD, MPH Presenter
Nicole Noyes MD Presenter
Jose Perea MD, PhD Presenter
Susan Pfau MA Presenter

65
FACULTY DISCLOSURES
The following faculty, moderators, planners and managers have nothing to disclose:
NAME ROLE IN ACTIVITY
Erin Peterson Presenter
Eric Reddy Presenter
Rebecca L. Siegel MPH Presenter
Robert Smith Presenter
Diana Sloan Presenter
Zsofia Stadler Presenter
Elena Stoffel MD, MPH Presenter
Denelle Suranski Presenter
Kana Wu MD, PhD Presenter
Susan Wyzoki Presenter
Ronit Yardin PhD, MHSA Presenter
Matthew B. Yurgelun MD Presenter

66
FACULTY DISCLOSURES
The following reviewers, planners and managers have nothing to disclose:
NAME ROLE IN ACTIVITY
Richard Barakat MD Planning Committee
Wasif Saif MD Course Co-Director
Cindy Borassi Planning Committee
Susan K. Peterson MS, LGC Course Co-Director
Thomas Weber MD, FACS Course Director
Mary B. Strong MA Planning Committee
Krista Nelson LCSW, OSW-C,
BCD, FAOSW
Planning Committee

67
FACULTY DISCLOSURES
Dennis Ahmen, MD, AGAF, FACG – Moderator/Presenter
Discloses that he receives honorarium from Ambry Genetics for speaking and
receives honoraria from Cancer Prevention Pharmaceuticals as a member of
their Data and Safety Monitoring Committee
Jordan Karlitz, MD, FACG
Discloses that he receives honorarium from Exact Sciences as an Advisor and
honorarium from Myriad Genetics for consulting services and as a member of their
speakers bureau.
C. Richard Boland, MD – Presenter
Discloses that he receives financial support from Ambry Genetics for teaching.
Whitney Jones, MD – Moderator
Discloses that she receives honoraria and consulting fees as a speaker for Myriad Genetics.

68
FACULTY DISCLOSURES
Zsofia K. Stadler, MD
Discloses that her spouse has a consultant/advisory role with Allergan, Adverum
Biotechnologies, Alimera Sciences, Biomarin, Fortress Biotech, Genentech, Novartis, Optos,
Regeneron, Regenxbio and Spark Therapeutics.
Heather Hampel, MS, LGC – Moderator
Discloses that she receives grant research support as a PI from Myriad Genetics, honoraria
from Beacon LBS as a Consultant, receives honoraria and is a stock/shareholder as an
Advisory Board Member for Genome Medical. She also receives honoraria from Invitae as an
Advisory Board Member.
Noah D. Kauff, MD
Discloses that he honoraria from BGI for giving lectures, consulting fees from AstraZeneca as
PI and consulting fees from Merck as PI.

69
Acknowledgements
The Colon Cancer Foundation and Northwell Health gratefully acknowledge
the exhibit sponsorship provided to support this activity by:
The Northwell Health Cancer
Institute

70
Acknowledgements
The Colon Cancer Foundation and Northwell Health gratefully acknowledge the
exhibit sponsorship provided to support this activity by:
LUC WALTER

71
Acknowledgements
The Colon Cancer Foundation and Northwell Health gratefully acknowledges
the exhibit sponsorship provided to support this activity by:
BRACCO DIAGNOSTICS

72
Acknowledgements
The Colon Cancer Foundation and Northwell Health gratefully acknowledges
the exhibit sponsorship provided to support this activity by:
never too young
Colorectal Cancer Alliance

73
Acknowledgements
The Colon Cancer Foundation and Northwell Health gratefully acknowledge
the exhibit sponsorship provided to support this activity by:
`
Advanced Surgery Center
of Long Island
Advanced Endoscopy
Center
Colon Cancer Coalition Carnegie Hill Endoscopy
The Endoscopy Center of
New York
Epigenomics/Epi pro colon

74
Acknowledgements
The Colon Cancer Foundation and Northwell Health gratefully acknowledge
the exhibit sponsorship provided to support this activity by:
East Side Endoscopy Liberty Endoscopy
Manhattan Endoscopy Merck
Myriad Physicians Endoscopy
Quest Diagnostics

75
Acknowledgements
The Colon Cancer Foundation and Northwell Health gratefully acknowledge
the exhibit sponsorship provided to support this activity by:
AliveAndKickn Boston Scientific
Medtronic Olympus

76
COURTESY REMINDER
Please set cell phones and electronic devices to silent mode,
or turn them OFF.
WIFI Network: Marmorino
Password: orange21
There are few outlets throughout the building so to help keep
everyone connected we have set up a charging station outside the
auditorium near the snack station.

77
COURTESY REMINDER
You have a printed Agenda in your folder as well as a digital Course Journal
online which includes the Agenda, Faculty Bios and a Summary of the abstracts.
It can be found at https://coloncancerfoundation.org/agenda
We will be following this agenda very closely and ask our distinguished faculty to
be aware of the time clock at the back of the room and the signs that will be
held up to remind you of your time remaining. If you run over you will hear
progressively louder reminders that your time is UP!
We also ask our phenomenal participants to be mindful of the time and duration
of breaks/lunch and to do their best to make it back to their seats on time.
We welcome the entire audience, Faculty, Exhibitors and Participants, to be
thoroughly engaged in the Strategic Planning Discussions following each Session
and on Day 2. Your opinion matters!
Bathrooms are located down the stairs and to the right.

78
•Thank You!

International Colon Cancer (C18) Incidence Trends to 2015: Ages 20-49?
Cancer Incidence in 5 Continents, International Association of Cancer
Registries and the International Agency for Research on Cancer
Thomas Weber, MD FACS
Professor of Surgery and Epidemiology
Donald & Barbara Zucker School of Medicine at Hofstra / Northwell
Director, Surgical Oncology, Northwest Region
Northwell Health, NY, USA

International Colon Cancer (C18) Incidence Trends to 2014? Ages 20-49
Cancer Incidence in 5 Continents, International Association of Cancer Registries and the
International Agency for Research on Cancer

What is the Global CRC Situation?
&
What Can We learn From That Data?

• “Understanding the current
patterns of CRC presentation
and its evolution from an
International Perspective is
imperative in order to direct
future prospects of reducing
the burden through cancer
prevention and care”

Ages 20-49

Ages 20-49

Ages 20-49

Ages 20-49

Ages 20-49

Ages 20-49

Ages 20-49

Thank You!

93
Patterns and trends in early-onset
colorectal cancer in the United States
Rebecca Siegel, MPH
EAO CRC Summit
May 2, 2019

Trends in CRC incidence by age, 1975-2016
50+ years
0
50
100
150
200
250
300
1975 1980 1985 1990 1995 2000 2005 2010 2015
Casesper100,000
Year of diagnosis
20-49 years
0
3
6
9
12
15
1975 1980 1985 1990 1995 2000 2005 2010 2015
Year of diagnosis
Men
Men
Women
Women

95
Generational changes in age-standardized CRC incidence
Rectum: IRR=4.3 (95% CI, 2.2-8.5)
Colon: IRR=2.4 (95% CI, 1.1-5.2)
Incidencerateratio(IRR)vs1950
Siegel et al. JNCI 2017

State variation in early-onset CRC in the U.S., 1995-2015
96
Data sources
North American Association of Central Cancer Registries (47 states), 1995-2015
Behavioral Risk Factor Surveillance System, 1995-2005
Population
Adults aged 20-49 years stratified by race/ethnicity
Measures
State-level changes in
 CRC incidence, 2006-2015
 Obesity prevalence (BMI>30 kg/m2)
 Heavy alcohol consumption (>14 and >7 drinks/week in men and women, respectively)

Colon
1 9 9 5 1 9 9 9 2 0 0 3 2 0 0 7 2 0 1 1 2 0 1 5
2
4
6
8
1 0
1 9 9 5 1 9 9 9 2 0 0 3 2 0 0 7 2 0 1 1 2 0 1 5
2
4
6
8
1 0
1 9 9 5 1 9 9 9 2 0 0 3 2 0 0 7 2 0 1 1 2 0 1 5
2
4
6
8
1 0
1 9 9 5 1 9 9 9 2 0 0 3 2 0 0 7 2 0 1 1 2 0 1 5
2
4
6
8
1 0
1995-2001, APC =2.2*
2001-2013, APC = 1.0*
2013-2015, APC = 3.7*
1995-1999, APC = 4.4*
1999-2015, APC = -0.4*
1995-2003, APC = 2.0*
2003-2015, APC = -0.2 1995-2015, APC = -0.1
Rectum
1 9 9 5 1 9 9 9 2 0 0 3 2 0 0 7 2 0 1 1 2 0 1 5
2
4
6
8
1 0
1 9 9 5 1 9 9 9 2 0 0 3 2 0 0 7 2 0 1 1 2 0 1 5
2
4
6
8
1 0
1 9 9 5 1 9 9 9 2 0 0 3 2 0 0 7 2 0 1 1 2 0 1 5
2
4
6
8
1 0
1 9 9 5 1 9 9 9 2 0 0 3 2 0 0 7 2 0 1 1 2 0 1 5
2
4
6
8
1 0
1995-2000, APC = 5.1*
2000-2015, APC = 2.1* 1995-2015, APC = 1.1* 1995 -2015, APC = 1.2*
1995-2015, APC = 0.4
Casesper100,000Casesper100,000
Asian/Pacific Islander
Non-Hispanic
Black
Hispanic
Non-Hispanic
White
Early-onset CRC trends by race/ethnicity, 1995-2015

98
Early-onset CRC incidence rates by state, NHW, 2011-2015
14.3
8.7
DC, 8.2
Incidence rates are per 100,000 population and age-standardized.

Changes in Early-onset CRC incidence by state, NHW, 2006-2015
AAPC=Average annual percent change in incidence rates during 2006 to 2015
40/47
states

0
1
2
3
4
5
6
7
8
1995 2000 2005 2010 2015
Casesper100,000
Year of diagnosis
Colorado
Colon
AAPC, 4.2
Convergence of colon & rectal cancer rates in NHWs
AAPC, 1.5
Rectum Nevada
Utah

101
Are changes in obesity correlated with changes in CRC?
Obesity 1995  2005
vs
CRC 2006  2015

October 11, 2018

103
Murphy et al. Gastroenterology 2017
“There's also a scenario in which this seemingly
glum cancer trend is in fact good news.”
Richard Harris, National Public Radio, Feb 2017

Are temporal trends in colonoscopy use concordant with
CRC incidence in young adults?
104
Data sources
National Health Interview Survey, 2000-2015
Surveillance, Epidemiology, & End Results Program, 2000-2015
Population
Adults aged 40-49 years
Measures
Changes in
 past-year colonoscopy use
 CRC incidence

Past-year colonoscopy, ages 40-49 yrs, 2000-2015
105
0
2
4
6
8
10
12
14
16
18
20
40-44 years 45-49 years
Prevalence
2000 2003 2005 2008 2010 2013 2015
2015 vs 2000 (absolute diff) 0.1, p=0.77 2.7, p<0.001

106
Casesper100,000
APC, 1.7*
APC, 1.1*
CRC incidence, ages 40-49 yrs, 2000-2015
40-44 years 45-49 years
*Annual percent change is statistically significantly different from zero (P<0.05)

Early-onset CRC by stage at diagnosis
40-44 years 45-49 years
Localized APC, 1.1*
Distant APC, 2.9*
Localized APC, 0.4
Distant APC, 2.3*
*Annual percent change is statistically significantly different from zero (P<0.05)

108
Trend in CRC mortality among adults 20-49 yrs, 1970-2017
Year of death
Deathsper100,000
2004-2017 APC, 1.3*
Year of death
2004-2017 APC, 1.8*
All races White
*Annual percent change is statistically significantly different from zero (P<0.05)

Summary & Conclusion
• Increase in CRC malignancies due to changes in exposure in addition to obesity and alcohol?
• Steepest increase:
 Youngest generations
 Rectum
 Non-Hispanic whites
 Western states – healthier lifestyles
• Highest rates in the South
3,600 CRC deaths in people 20-49 years in 2017

110
Acknowledgements
Ahmedin Jemal, DVM, PhD
Stacey Fedewa, PhD
Genet Medhanie, DVM, PhD
Kim Miller, MPH

111
Thank you!

Utilization of CDC Comparative
Effectiveness Research Data to
Assess Lynch Syndrome Screening
Practices and Surgical Management
in Early-onset Colorectal Cancer
Jordan J. Karlitz, MD
Associate Professor of Medicine
Director,
GI Hereditary Cancer and Genetics Program
Division of Gastroenterology, Tulane University School of Medicine

Disclosures
• Advisor Exact Sciences
• Consultant and Speaker’s Bureau Myriad Genetics

Objectives
– Review components CDC Comparative Effectiveness Research (CER) Data set
• Potential utility in using CER data to study EOCRC, understand rising EOCRC rates etc.
– Example of using CER data to understand population-based Lynch Syndrome
screening and surgical management practices
• Highlights detailed/granular nature of CER data set

CER Data Overview
• CER definition:
– “The generation and synthesis of evidence that compares the
benefits and harms of alternative methods to prevent, diagnose,
treat, and monitor a clinical condition or improve the delivery of
care”
• Funding available to CDC for data collection in 2011 only
• CDC established 10 specialized registries within National
Program of Cancer Registries (NPCR) to participate
• AK, CO, ID, LA, NH, NC, RI, TX, CA (parts), FL (parts)
• Focused on 4 cancers—breast, colon, rectum and CML
• CER=largest and most comprehensive data collection effort
by population-based registries in the U.S.
Chen, V.W., et al., Enhancing Cancer Registry Data for Comparative Effectiveness
Research (CER) Project: Overview and Methodology. J Registry Manag, 2014.
41(3):103-12.

CER Data Overview
• CER:
– enhanced data collection (compared to usual registry practice) of
cancer treatment, biomarkers (KRAS, MSI etc.), height, weight,
smoking status, comorbidities, insurance coverage, income level etc.
• Training provided by CDC to state registries and registry
abstractors to standardize data collection processes
• Hospital registrars, or central registry abstractors who directly
visited facilities, collected data and fed back to state registry
• Data collected from hospital and out-of-hospital sites

CER Data Overview
• 75,042 cancer patients
• 64.6% breast cancer, 24.5% colon cancer, 9.5% rectal cancer,
1.4% CML
• Colon cancer 18,143 cases
• Rectal cancer 7,129 cases
• 1709 colon cancer patients <50
• 1049 rectal cancer patients <50

Example of CER dataset utilization
LA incidence 46.5/100,000 (4th highest in U.S.)
U.S. incidence 39.2/100,000

Colorectal Cancer Incidence Rate: Louisiana, 2010-2014
Age 50-74
Created by Louisiana Tumor Registry, 03/01/2017.
Standardized Incidence Ratio is calculated as the incidence rate in the local area relative to the state-wide rate for a 5-year period.
They are age-adjusted according to US standard 2000 population. This map shows the SIRs for 1148 overlapping circular areas centered on
the census tract centroids and each area contains around 20,000 populations and at least 21 cases.
Standardized Incidence Ratio (SIR)
Percentile Rank (1148 census tracts)
<=11% percentile (0.8)
<=22% percentile (0.88)
<=33% percentile (0.92)
34%-66% percentile
>=67% percentile (1.04)
>=78% percentile (1.1)
>=89% percentile (1.19)
Acadian Region (? Lynch syndrome founder effect)
Geospatial Analysis, Census Tract Analysis: LTR Data
-Incidence rate in local area compared to statewide rate
-1148 census tracts vs 64 parishes

Lynch Syndrome
• 1:300 in U.S. mutation carriers, many undiagnosed (> 1 million people)
• Autosomal Dominant, up to 80% lifetime risk of CRC
• Tumor testing with MSI and/or IHC
https://www.cancer.net/cancer-types/lynch-syndrome

Use CER data to assess abnormal MSI/IHC test
results in Acadian Region
• Biomarker data existed, but testing rates so low that would not
help understand potential hereditary burden of CRC in region
• Shift gears and study population-based testing practices in
Louisiana (quality of care)

Underutilization of LS Screening with MSI/IHC

Underutilization of LS screening
• CDC CER Data focused on Louisiana Tumor Registry
• First population-based study examining LS screening practices in U.S.
• All patients ≤ age 50 in Louisiana diagnosed with CRC in 2011 (274
patients)
• Care at 61 distinct health care facilities
• LS screening rate with MSI and/or IHC only 23% (should be 100%)
Karlitz JJ et al: Population-based Lynch Syndrome screening
by microsatellite instability in patients ≤50: prevalence, testing determinants,
and result availability prior to colon surgery. Am J Gastroenterol. 2015 Jul;110(7):948-55

Variables associated with the ordering of MSI
and/or IHC testing
% Testing Unadjusted OR Adjusted OR
Hospital Type
THCP 16.7% *0.30 (0.11-0.77) 0.55 (0.18-1.63)
COMP 40.4% Ref Ref
CHCP 17.0% *0.31 (0.10-0.83) 0.62 (0.20-1.88)
Public 6.5% *0.10 (0.01-0.48) *0.17 (0.04-0.77)
Non-CoC/Non-
Public
24.7% 0.49 (0.22-1.07) 0.92 (0.39-2.17)
1st Degree
relative CRC
Yes 48.0% *2.98 (1.21-7.33) *2.76 (1.03-7.40)
No 23.6% ref ref
CHCP, community hospital cancer program
CoC, Commission on Cancer
COMP, community hospital comprehensive cancer program
THCP, teaching hospital cancer program

Variables associated with the ordering of MSI and/or IHC
testing
% Testing Unadjusted OR Adjusted OR
Region
Region 1 16.4% Ref Ref
Region 2 35.1% *2.76 (1.24-6.16) *2.88 (1.13-7.35)
Region 3 19.5% 1.24 (0.57-2.69) 1.67 (0.67-4.13)
Urban/Rural
Urban 25.9% Ref Ref
Rural 12.3% *0.40 (0.19-0.87) 0.49(0.21-1.12)
Region 1=Includes state’s academic medical centers and surrounding areas (12 parish region)
Region 2=State capital region and surrounding areas (11 parish region) (Pennington
Biomedical Research Center-genomics focus).
Region 3=All other parishes in Louisiana

Timing of MSI/IHC testing
• Preoperative testing on colonoscopy biopsy
specimen (as opposed to CRC surgical resection)
can help guide germline testing and extent of
colonic resection
• High metachronous CRC rates in LS in segmental
resection
• If MSI/IHC done on surgical resection specimen,
results return after operation (no opportunity
for risk/benefit discussion of extent of surgery)

Timing of MSI/IHC testing
• MSI and/or IHC results available preoperatively in only 16.9%
of cases.
–Testing ordered on colonoscopy specimen only 34.9% of the
time
–Even if done on colonoscopy, some patients go to OR
without waiting for results to return
–Ordered on surgical specimen 61.9% of the time

IHC results
- Of the 60 patients tested for MSI and/or IHC who had available results,
13 out of 60 patients (21.7%) had abnormal results.
- Of the 8 patients with abnormal IHC, 7 (87.5%) had a pattern that would be consistent
with LS

Extended Colonic Resection Study
Karlitz JJ et al. Factor Associated with the Performance of Extended Colonic Resection vs.
Segmental Resection in Early-Onset Colorectal Cancer: A Population-based Study. Clinical
Transl Gastro, 2016.

Results
• Same early-onset cohort in Louisiana.
• Only 6.8% underwent extended colonic resection (ECR).
• ECR not associated with abnormal MSI/IHC results.
– Abnormal test results most commonly available post-operatively so
do not know LS risk pre-op.
• ECR associated with polyposis and age < 45.

2018-National Survey of GIs Through ACG Mailing List-Why are
MSI/IHC Testing Rates So Low?
Use LA CER
data as a jumping
off point to
understand
what is happening
nationally.
Noll A, Parekh PJ, Zhou M, Weber TK, Ahnen D, Wu XC, Karlitz JJ. Barriers to Lynch Syndrome Testing
and Preoperative Result Availability in Early-onset Colorectal Cancer: A National Physician Survey Study
Clinical Transl Gastro, October 2018.

Goals of Study
• What are barriers to ordering MSI/IHC?
• What are barriers to preoperative result availability?
• 5786 confirmed ACG questionnaire recipients by email.
• 509 took survey (8.7% response rate).

Barriers to Test Ordering
• Cost of testing (33.3%).
• Unfamiliarity interpreting results (29.2%).
• Unavailable genetic counseling (24.9%).
• Non-academic and rural settings associated with cost and
genetic counseling barriers.

Inconsistencies in who is felt should order
MSI/IHC may lead to diffusion of responsibility,
preventing consistent testing (assume others
ordering when they are not)

Conclusions
• SEER data used to identify high-risk Acadian population (? Lynch syndrome founder
effect)
• CER data unable to be used to understand potential genomic burden due to low
MSI/IHC testing rates
• CER data able to be used to obtain granular understanding of Lynch syndrome
management practices on a population-based level (testing rates, surgical
management)
• Potential future applications of utilizing CER data set to be understand EOCRC (2011
data on 2758 CRC patients <50)

Overview of European Cancer
Registries Data Resources:
Early Onset CRC
Irit Ben-Aharon MD, PhD
Head, Division of Oncology
Rambam Health Care Campus,
Haifa, Israel
Head, Young-onset Task Force, GI Group, EORTC

Disclosure:
None

Statistics:
Digestive tract Cancer
Long-Term Trends in SEER
Incidence Rates, 1975-2015
<50y
http://seer.cancer.gov/statfacts/html/
Colorectal Cancer
Long-Term Trends in SEER
Incidence Rates, 2000-2015
<50y

• ENCR – European, Network of Cancer Registries
Network since 1990, collaboration between cancer registries
Cancer incidence and mortality in Europe
• WHO – World Health Organization

Nordic cancer registries NORDCAN
Norway
Denmark

Netherlands

France

United Kingdom

Germany

Czech Republic

Italy

Spain

Turkey

Israel

China

Japan

Conclusions:
The trend observed is not homogenous:
 Increased incidence in Western Europe
 Mixed trends in Middle Europe
 Stable trend in Mediterranean countries
 Stable trends in the Far East

 Obesity
 Antibiotic use
 Diet?
 Ethnicity?
Potential contributors:
What is the role of epigenetic modifications?

Thank you

Survey of Young-Onset Patients,
Survivors, and Caregivers: Self-
Reported Clinical, Psychosocial,
Financial and Quality of Life
Experiences
Ronit Yarden, PhD, MHSA
Director of Medical Affairs

Patients’ Demographics
Patient and Survivor Characteristics
N=1195
Sex (No.)
Females 976
Males 219
Type of Cancer
Colon Cancer 875
Rectal Cancer 315
Race / Ethnicity (No.)
White Caucasians 1045
Hispanic / Latino 60
African Americans 49
Asians / Pacific Islanders 23
Native Americans 14
Others 4
Age at Diagnosis (No.)
<20 5
20-29 112
30-39 393
40-49 684
US=1090

Patients’ Reported Symptoms and
Their Duration Prior to Diagnosis%ofPatients
Time Before Reaching Out
to a Physician

Saw 1 Dr.
33%
Saw 2 Drs.
40%
Saw 3 Drs.
16%
Saw 4 Drs. or more
11%
67%
Young-Onset Patients Visited Multiple
Physicians Prior to Diagnosis
17%
ER
50%
Misdiagnosed
0
10
20
30
40
50
%ofPatientsandSurvivors
p<0.001
p<0.03
p<0.01
p<0.009
20-29
20-29
30-39
30-39
40-49
40-49
>3 physicians >4 physicians
Number of Physicians Prior to Diagnosis

Young-Onset Patients’ Ethnicity
and Their Diagnosis
1
2
3
4
0
10
20
30
40
50
Number of Physician Prior to Diagnosis
%ofPatientsandSurvivors
Caucasians Hispanic/Latino African Americans
C
aucasiansH
ispanic/Latino
A
frican
A
m
ericans
0
10
20
30
40
Diagnosed in the ER
%ofPatientsandSurvivors
18%
25%
32.0%
P<0.0001

Young-Onset Patients were Diagnosed in
Late Stages of the Disease
% of Patients Diagnosed in Each Stage
0.0
0.1
0.2
0.3
0.4
Frequency
Stage at Diagnosis
I II III IV
p<0.03
p<0.001
p<0.0001
Proportion of Patients That Had to See More Than 3 Physicians

Most Common Misdiagnoses Reported
by Young-Onset Patients
“I was told I had colitis due to stress”
“I was told I am depressed (by a male doctor)
because I had no children. I was not….”
H
em
orrhoidsIB
S/IB
DA
nem
ia
D
iverticulitis
G
ynecologicalissues
Post-C
hildbirth
sym
ptom
s
A
ppendicitis
O
ther
0
100
200
300
NumberofPatients

Patients’ Reported Quality of Life

Caregivers’ Experience
60%
of caregivers did not get all
questions answered at the
patient’s diagnosis and did
understand treatment
risks.
75%
of health care professionals
did NOT provide information
on organizations and support
groups for young-onset
colorectal cancer.
Caregivers N=427
Sex (No.)
Females 376
Males 51
Age (No.)
18-29 45
30-39 289
40-49 92
NA 1
Race / Ethnicity (No.)
White Caucasians 212
Hispanic / Latino 77
African Americans 88
Asians / Pacific Islanders 27
Native Americans 20
Others 3
50%
of doctors did not talk to the
patient's family about their
elevated risk of the disease and
the need for screening 10 years
prior to the patient's age at
diagnosis.

Caregivers’ Experience
Role changes (59%)
No effect (23%)
Multiple psychosocial effects (18%)

Young-Onset Patients Survey Summary
 Young adults experience multiple symptoms but they may not be aware of young-onset colorectal
cancer and do not associate their symptoms with CRC. One in four patients delayed reaching out to
their doctor for more than one year.
 There is an urgent need to raise awareness among medical professionals of the increasing incidence of
young-onset CRC and that the disease can affect patients under 50 years old.
 The majority of young-onset patients and survivors were diagnosed with advanced, metastatic disease,
which is proportionally higher than the overall CRC population.
 There is a correlation between late stage diagnosis and the number of different physicians / providers
patients had to visit.
 The study was subject to certain limitations, including access to technology, gender bias (~80% female)
and race/ethnicity bias (87% White Caucasian). The Alliance plans to increase its outreach and
enhance diversity among participants in future surveys.

 Resources are needed to improve the ability for caregivers to manage everyday
tasks, potentially helping caregivers feel more organized and in control.
 Tools to care for their loved ones will reduce emotional and physical demands
involved with caregiving that can cause strain and burnout.
 The Alliance use these survey results to learn about and track self-reported medical,
psychosocial, and quality of life experiences, allowing our patient and family support
program to develop resources and implement programs for this often overlooked
group.
Young-Onset Caregivers Survey Summary

Acknowledgements:
Kim Newcomer
Never2Young Advisory board
Steven Bushong
Ali Miller
Will-Jose Velez-Gonzalez
Patrice Brown