National Pediatric Cancer Registry Work Group
December 2-3, 2009
Agenda
Goals:
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To fully explore and understand different data systems used for collection of data
about pediatric cancer
Explore the needs of pediatric cancer epidemiologists and public health needs
Identify methods to address the research needs identified utilizing cancer
registries and other databases or other methodologies.
Identify opportunities for creating new partnerships between cancer registry
community and pediatric cancer researchers to increase the research value of
pediatric cancer registries and other research databases
Outline the methodology and processes needed to respond to needs of cancer
researchers and public health needs.
Day One (1:00 PM – 5:30PM)
1-1:30
Welcome and Introductions
-Marcus Plescia, MD, MPH, DCPC Director, CDC
1:30-2:00
Background
Carolyn Pryce Walker, Conquer Childhood Cancer Act of 2008
-Christie Eheman, PhD., Cancer Surveillance Branch Chief, CDC
Data Needs of Epidemiologic Researchers
-Debra L Friedman, MD, Vanderbilt-Ingram Cancer Center
2:00-2:15
Questions and Answers
2:15-3:00
Small Group Discussion:
What are the primary data needs for epidemiologic research in childhood
cancer?
What other system issues are important for childhood cancer research
(privacy issues, rapid case reporting)?
What are the public health needs?
What information do central registries collect?
Reports Back
3:00-3:15
BREAK
3:15-4:15
Currently Available Data Systems and Data Collection Processes
Childhood Cancer Research Network (CCRN)
-Julie Ross, PhD.
Cancer Registries
National Program of Cancer Registries (NPCR-CDC)
-Umed Ajani, MD.
Surveillance, Epidemiology, and End Results (SEER-NCI)
-Dave Stinchcomb, PhD.
Children’s Oncology Group Longterm Follow-up Center
-Dennis Deapen, DrPH, LA Cancer Surveillance Program
Questions and Answers
4:15-5:00
Increasing Rapidity of Case Reporting for Pediatric Cancer Cases –
Traditional Methods and New Approaches
Traditional and Other Potential Methods for Rapid Case Ascertainment in
Cancer Research
- Carol Lowenstein, MBA, Harvard School of Public Health
Small Group Work: When is rapid case ascertainment important? How
Can We Improve/Implement more rapid case reporting of cancer within
state cancer registries? Are new approaches like electronic reporting an
option? How else can needs be met?
Reports Back
5:00-5:30
Ethical and Privacy Issues
Human Subjects and Privacy Issues Related to Patient Contact Involving
Children
- Dennis Deapen, DrPH, LA Cancer Surveillance Program
Large Group Discussion: Ethical and Privacy Issues Related to ChildrenMethods of optimizing and methods for balancing those concerns with
public health and research needs; state rules and needs; federal rules
Day Two (8:30 AM – 12:00 PM)
8:30-9:30
Methods for optimizing and expanding current data systems or
building new data systems to meet epidemiologic pediatric cancer
research and public health needs
Small groups - Explore methods and ideas in an organized way to capture
different approaches and concepts
9:30-10:15
Report back from small groups and discussion
10:15-10:30
BREAK
10:30-11
Building Relationships
Building relationships among cancer registries, pediatric oncologists and
pediatric cancer centers to maximize reporting and research efforts
Large Group Discussion: How can we improve our working relationships
to maximize efficiency and improve participation in childhood research?
11-11:30
Summary-What Major Themes Arose from Our Discussions
11:30-12
Next Steps and Adjourn