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.
- Email questions to nciepimatters@mail.nih.gov
- Ask questions on Twitter (Follow @NCIEpi; #TrendsinEpi)
- 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.