Trends in 21st Century Epidemiology: From Scientific Discoveries to Population Health Impact

Julie Buring Presentation: What Have We Learned From Epidemiology Cohorts and Where Should We Be Going Next?

Slide 1 of 21: Your Charge!

  • Engage, participate, invigorate!
  • Think provocatively and creatively about the future of cancer epidemiology and how the discipline needs to evolve with a changing landscape.
  • Email online and tweet about the meeting.
  • Engage others and continue the conversation after you leave tomorrow.

Slide 2 of 21: What We Have Learned From Epidemiology Cohorts and Where Should We Be Going Next?

Julie E. Buring, Sc.D.
December 13, 2012


Slide 3 of 21: NCI Cohort Consortium

  • NCI Cancer Consortium annual Symposium, October 2012.
  • Took a hard look at ourselves, 12 years later.
  • Formed by NCI's intramural and extramural staff, with cohort PIs. Currently includes 46 cohorts, 15 countries, 4 million study participants, 2 million DNA samples.

Slide 4 of 21: NCI Cohort Consortium

  • Mission:
    • Foster communication among investigators leading cohort studies of cancer.
    • Promote collaborative research projects for topics not easily addressed in a single study.
    • Identify common challenges in cohort research and search for solutions.

Slide 5 of 21: NCI Cohort Consortium

  • Strengths and limitations to accomplish mission?
  • Focus has been on etiology of cancer.

Should we expand or extend our activities over next decade?

  • Gaps in knowledge we could best next address?
  • Obstacles? How can we overcome?

Slide 6 of 21: Are Epidemiologic Studies Relevant?

  • Increasingly so, as focus on complex interactions of genes and environment. Multi-level, systems, networks. Low level risks.
  • Cohort studies unique strengths:
    • Prospective data, large sample sizes
    • Multi-ethnic composition
    • Extensive phenotyping, with serial measurements over time
    • Biobanks, genetic and biomarkers components

Slide 7 of 21: Expand or Extend Cohorts? Gaps in Knowledge

  • For cancer...
  • Detailed molecular characteristics of cancer subtypes; assess ability to obtain tumor tissue if not already obtained, with issue of time since diagnosis.
  • Extend to recurrence, second cancers, survivorship; cancer treatment.
  • Consider the lifecourse; inclusion of children and adolescents.
  • Further methodology to validate, improve, adapt, extend exposure assessments (PA - actigraphy; use of social media).
  • Implications: Revisit stored samples? Recontact? IRB issues. Legacy consents.

Slide 8 of 21: Expand or Extend Cohorts? Gaps in Knowledge

  • Beyond cancer...
  • Compelling imperative to extend beyond cancer to multiple disease endpoints within cohorts.
  • Mission (communication, collaborate, challenges) not unique to cancer.
  • Value added; scientifically worthwhile; cost-effective.
  • Achievable? We believe yes...

Slide 9 of 21: Multiple Outcomes

  • Many major risk factors for cancer are major risk factors for multiple diseases.
  • Many cohorts jointly funded.
  • Multiple outcomes assessed same rigor as cancer (WHS: cancer and CVD (MI, stroke, CV mortality); CHF, AF, PE/DVD, diabetes, cognitive function, vision, neuro, etc).
  • Cancer cohort members also members of other non-cancer consortia.

Slide 10 of 21: Multiple Outcomes

  • Proposed first step: proof-of-principle by cohorts validated non-cancer outcomes (eg. CVD).
  • If feasible, extend communication (marketing) begun at October meeting to other Institutes: think of us, we can be part of solutions.

Slide 11 of 21: Obstacles to be Overcome

  • Many - but can be overcome - and progress already being made.
  • Cannot overstate: NIH is critical to assist with and accelerate the process.
  • Some obstacles are structural:
    • For joint outcomes, need facilitating joint funding by multiple Institutes. Critical!
    • Need non-disease specific funding mechanisms, to deal with disease-specific study sections.
    • Integrated NIH management of cohorts.

Slide 12 of 21: Obstacles to be Overcome

  • #1 concern of cohort leaders: need financial support for basic infrastructure: maintain data collection, blood repository, validation endpoints.
  • Critical to continue to contribute to consortium. Cannot underestimate never-ending concern, time-consuming.
  • Can't be unfunded activities. Consider preparation of numbers events, consortium datasets, standardized defns, multiple requests concurrent. No sources for funds.

Slide 13 of 21: Obstacles to be Overcome

  • Beyond maintaining, support to add new methodologies and technologies as needed to improve cohort.
  • Central assistance for cross-cohort projects, such as harmonization.

Slide 14 of 21: Obstacles to be Overcome

  • Some obstacles are methodologic:
    • NIH serving as liaison for cohorts to get low-cost opportunities to access record linkage, like Medicare/Medicaid (CMS).
    • Driver to overcome hurdles for new record linkage opportunities, such as for those under 65, or mechanisms (EMR).
    • Tracking cancer or mortality outcomes in accessible, cost-effective way.
    • One stop shopping. WHS: IRB applications for many states.

Slide 15 of 21: NCI New Initiatives

  • Facilitated harmonization of data by outside group. It worked! Time and cost reasonable, trauma low.
  • NCI Cancer Epidemiology Cohort Funding Opportunity Announcement.
  • Interagency agreement re NDI; streamlining, improvement mortality assessment.
  • Pilot of National Virtual Cancer Registry, not centralize storage of data, but centrally link all cohort registries.

Slide 16 of 21: Success of Consortium

  • Bob Hoover said development and first successes of consortium was grass roots effort.
  • True at first, but would not have been enough to continue, without active participation of NCI. True collaboration (R01), and progress on obstacles.
  • Never forget how much cohorts want to be collaborating for scientific reasons - just need help.

Slide 17 of 21: Maintaining the Pipeline

  • Some obstacles are human resources...
  • Have to address career development of young investigators. Consortia are problematic.
  • Promotion committees appreciate consortium scientific contributions, but don't know how to recognize an individual's contributions to consortial activities, especially if co-author 20 of 40.
    • Role of senior investigators to educate.
    • Annotated CVs regarding middle authorship, contribution.

Slide 18 of 21: Maintaining the Pipeline

  • Renewal of grants - what is Progress Report?
  • Data sharing with outside collaborators, broader public.
  • Resource intensive to set up: data updated yearly, data definitions, policies, forms and procedures. Again, unfunded mandate- unless can include in infrastructure grant mechanism.

Slide 19 of 21: The Future Perfect

  • Jointly funded so can cross multi-disciplinary lines, maximize impact.
  • Have cohorts that in present have been harmonized centrally to the extent possible; new cohorts have anticipated need in design.
  • Design/conduct of study not harmonized; distinctive reflecting population to be addressed.
  • Have facilitated access to inexpensive common data sources to ascertain events/exposures.
  • Leveraged innovative methods: digital age.

Slide 20 of 21: The Future Perfect

  • Have a reliable source of continued infrastructure funding.
  • Focused on "better, faster, cheaper". Conduct of studies as resources routine, business-like.
  • Makes cohorts very flexible.
  • Provides ability for us to concentrate on doing our scientific job, to be a cornerstone and push the field.
  • Think ahead when beginning observational study or trial - can we piggy-back, how will use, can we embed, etc.

Slide 21 of 21: Use Synthetic vs. Form Mega Cohorts?

  • Longstanding discussion - but one does not preclude the other.
  • Leverage existing cohorts while developing new ones appropriate to fill identified gaps.
  • Don't need to wait.

Won't have everything needed, taking all cohorts together - but no perfect new cohort either. Do have enough to establish rich research portfolio on environmental, lifestyle and genetic factors on cancer and other diseases.

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