This document discusses cancer survivorship research from a public health and population-based perspective. It introduces the Cancer Prevention and Control Research Network (CPCRN), which conducts population-based cancer survivorship research through various workgroups and studies. Examples of CPCRN survivorship research projects include a study on cancer survivors' transition to post-treatment care, a clinical trial evaluating a group visit model for cancer survivors, and population-based cancer registries that collect long-term family health history data. The document advocates for continued survivorship research and describes how budget cuts can negatively impact important research studies and programs.

1. Cancer Survivorship Research-
The Public Health and Population
Based Approach
Andrea (Andi) Dwyer, Program Director
Cancer Prevention and Control Research Network
University of Colorado Center

2. Bench to Bedside
Basic Preclinical Translational Clinical
Dissemination Adoption
Research Research Research
Many
Ideas
Population
Affected by
Cancer

3. Cancer Prevention & Control
Research Network
• The CPCRN was initiated in October 2002, with funding from
the Centers for Disease Control and Prevention (CDC) &
National Cancer Institute (NCI)
• It is a thematic research network of the CDC Prevention
Research Centers (PRCs)
• The mission of CPCRN is to accelerate the adoption,
implementation, translation, and dissemination of
evidence-based cancer prevention/control strategies
• Several workgroups; Marcia Ory-Texas, Betsy Risendal and
Andrea Dwyer Survivorship Workgroup co-chairs-Colorado

4. CPCRN Network Center Map

5. Examples of Public Health
and Population Based
Survivorship Research
1. Transitioning from active cancer treatment to
survivorship
2. Managing long term cancer symptoms and side
effects in the community
3. Registry of colorectal cancer survivors

6. A Novel Primary Care CLINICAL Group Visit
Intervention for Cancer Survivors:
What Is Next (WIN)

7. WIN Pilot Series Results
• Group visit model provides strategy to focus on
targeted health behaviors
• Group visits are feasible and acceptable to survivors
(and caregivers)-80% Retention
• Engages primary care providers/practices into
survivorship phase of care
• Dissemination planned to other areas/clinic sites
• Improvements in physical activity, nutrition and
communication with providers and family

8. Cancer-Thriving and Surviving (CTS)
Wait-Listed Randomized Control Trial
1. Self-management is one of the few evidence-based strategies for self-
management support is the Chronic Disease Self-Management Program
(CDSMP).
2. The CDSMP is a six week, NOT MEDICALLY BASED -
community-led, high fidelity group problem-solving/ educational
intervention delivered through trained peer leaders (Stanford Patient
Education Center).
Research Goal:
1. Describe the adaptations made to the CDSMP for the Cancer
Thriving and Surviving Program, and evaluate the perceived
satisfaction and utility of these adaptations among survivors.
2. Demonstrate the feasibility/ acceptability of the delivery
and evaluation of the Cancer Thriving and Surviving Program

9. Recruitment Goal: 300 people
Curriculum Revision Achievement: 323!!!
What It Took:
2 Years (6 months longer than
planned)
• Community partner who
actively recruited for trial at
$70,000
• Television-Radio and
Newspaper
• Flyer distribution and outreach
at physician offices and
treatment centers
Interim Results:
• Improvements in Outcomes
(pending as not final analysis)
• Able to reach recruitment
goals
• 15% Colorectal Cancer
Survivors

10. *Family Cancer Registries
*Cancer is a reportable disease and in most US States
Tumor Registries are funded by CDC
• Colon Cancer Family Registry (CCFR)
• Cancer Genetics Network (CGN)
• Rare Cancer Genetics Registry (RCGR)
• NCI-funded
• Multi-institutional
• Population and clinic-based recruitment
• Central data collection
• Multiple Outcomes
• Long-term follow-up
• Consent for re-contact
• Goal: facilitate research

11. Colon Cancer Family Registries
Table 6. Survey Data Collected by Participant Type
Since 1997 Participant Type Baseline 5-yr follow-up 10-yr follow-up
survey (to date)* (to date)*
• 35,300 enrolled – 12 centers
• 10,225 families
Colorectal Cancer 11,635 6,233 (7,224) 2,539 (2,973)
• Status: long-term follow-up Sub-cohort
Other Cancer Sub- 3,629 2,361 (2,805) 992 (1,062)
Data available cohort
• Family cancer history Unaffected Sub- 20,033 13,370 (16,048) 4,726 (6,077)
cohort
• Risk factors – diet, exercise,
hormone use, alcohol, screening TOTAL 35,297 21,964 (26,077) 8,257 (10,112)
history, NSAIDs
• Clinical data – tumor stage,
grade, histology
• Biospecimens – blood, tumor
– MSI, IHC, methylation,
BRAF, MMR sequencing

12. As An Advocate…
• Find a Trial
• Join a Trial
• Spread the Word
• Research Does NOT Stop after
Treatment
Agencies and Organizations to Contact for Population and Public Health-
Survivorship Research
LIVESTRONG: Programs and Partnerships www.livestrong.org
NCI: Office of Cancer Survivorship www.dccps.nci.nih.gov
ACS: Survivorship Trials and Behavioral Research www.cancer.org
Community Cancer Centers-Research http://ncccp.cancer.gov
NCI Designated Cancer Centers http://www.cancer.gov

13. What Does a Budget Cut Mean...
Does Even A 10% Cut Make a Difference?
Total CPCRN Budget
$300K
CCFR
Funding Was Decreased for
the Colon Cancer Family Minus 10%=$270K
Registry Project During
Biggest Phase of Reaching
Rural Communities in $30,000 Less
Colorado – this impacted
representation of populations.
Research Assistant time
reduced from 100% to 40% CTS
Wait List Opportunity
Might Not Be
WIN Program Possible in CTS
halted for several months-was Trial…Changing
the only survivorship program Research Design
available at time at University
of Colorado Cancer Center

14. Opportunities…
Patient Protection and Affordable Care Act
• Better accessibility to health care
• Person centered care-improved coordination
• Emphasis on primary care
• Greater Attention to Survivorship
The Message!
• There are nearly 13 million Cancer Survivors in the
United States…
• Survivorship Research and Improving Care is
vital for the health of our nation!