Utilizing Data from Cancer Patient & Survivor Studies:
Understanding the Current State of Knowledge and Developing Future Research Priorities

November 3, 2011 in Washington DC


The number of cancer survivors in the United States continues to increase and as a result, disease recurrence and the possible late effects of cancer treatments are of increasing importance. Although numerous epidemiologic studies have investigated factors that affect cancer risk, far fewer have addressed the extent to which demographic, lifestyle, genomic, clinical, and psychosocial factors influence recurrence and other cancer outcomes. Understanding how these factors are related may help identify those at high risk of poor outcomes and inform optimal management strategies for cancer patients.

To address these questions and identify opportunities for future cancer outcomes research, NCI sponsored a workshop "Utilizing Data from Cancer Survivor Cohorts: Understanding the Current State of Knowledge and Developing Future Research Priorities" in Washington, D.C. on November 3, 2011.

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The goal of the workshop was to discuss how to optimize research strategies, leverage available survivor data sources, and determine scientific research priorities for issues related to cancer outcomes in new and existing cancer survivor cohorts. These cancer outcomes include clinical, genomic, and lifestyle factors in cancer progression, recurrence, and survival; adverse effects of treatments; and secondary cancers. More than 90 scientists with expertise in clinical, epidemiologic, genomic, behavioral, statistical, psychosocial, and the basic sciences participated. Confronted with limited resources, it is essential that the highest priority scientific questions be addressed in the most cost-effective way using carefully constructed study designs and rigorous methods.

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Workshop Commentary

Elena JW, Travis LB, Simonds NI, Ambrosone CB, Ballard-Barbash R, Bhatia S, Cerhan JR, Hartge P, Heist RS, Kushi LH, Lash TL, Morton LM, Onel K, Pierce JP, Robison LL, Rowland JH, Schrag D, Seminara D, Shu XO, Ulrich CM, Freedman AN. Leveraging Epidemiology and Clinical Studies of Cancer Outcomes: Recommendations and Opportunities for Translational Research. JNCI. 2013 Jan 16;105(2):85-94.

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Research Resources

During the November 3, 2011 workshop, more than 50 cancer patient and survivor cohort data resources were identified that may be of interest to cancer outcomes researchers. We continue to build this resource and welcome additions.

View the list of Cancer Patient and Survivor Cohort Studies.

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Related Funding Opportunities

A related NCI Funding Opportunity Announcement, Core Infrastructure and Methodological Research for Cancer Epidemiology Cohorts (UM1), (PAR-11-167), was announced in March 2011. This PAR invites grant applications to provide targeted infrastructure support for the core functions of cancer epidemiology cohorts and methodological research.

The infrastructure can support existing or new cancer epidemiology cohorts. This PAR will support core functions for cancer epidemiology cohorts currently funded through other grant mechanisms by the Epidemiology and Genomics Research Program (EGRP) and other components of NCI's Division of Cancer Control and Population Sciences (DCCPS). The PAR expires November 9, 2013, unless reissued. View Frequently Asked Questions about this PAR.

View the full list of EGRP FOAs.

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For further information or questions, contact Joanne Watters Elena, Ph.D., M.P.H., Program Director, Clinical and Translational Epidemiology Branch, Epidemiology and Genomics Research Program.

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