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Enhancing Registry-Based Research: A Virtual Pooled Data Resource. Dennis Deapen, DrPH NAACCR, Austin, TX June 13, 2013. NAACCR & the National Program of Cancer Registries. Registry environment prior to NAACCR Unique aspects of NAACCR Aspirations met and not met
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Enhancing Registry-Based Research: A Virtual Pooled Data Resource Dennis Deapen, DrPH NAACCR, Austin, TX June 13, 2013
NAACCR & the National Program of Cancer Registries • Registry environment prior to NAACCR • Unique aspects of NAACCR • Aspirations met and not met • Potential future areas of contribution Don Austin, MD, MPH NAACCR 2012
Some potentials have not yet been reached. • In particular, some of the advantages of “Population Monitoring” • FDA post-marketing surveillance • Occupational hazards • Large cohort research projects
Cancer Surveillance Systems to the Rescue! Central registry-based research should support: • Population-based research • Post marketing surveillance • Rare tumors research • Rare exposure research • Multi-state or national cohort studies
Cancer Surveillance Systems to the Rescue!...Except • Currently, accessing each individual state cancer registry “silos” is: • Costly • Administratively complex • Time consuming We’re the barrier!
Adventist Health Study-2 (NAACCR conference2010) • Nation-wide diet-cancer cohort requires matching with all US cancer registries (16 completed) • Applications 0-28 pages • Average time from submission to completion 5 months (range 3 weeks to 2.6 years) • Cost $0 - $4500
Adventist Health Study-2 • Now 45 states • 8 years • What if they could have linked with 50 states- overnight?!
Cancer Epidemiology Cohorts • National meeting November 2011: Utilizing Data from Cancer Patient & Survivor Studies • >42 active cancer cohort studies identified which could benefit from a pooled linkage resource
Old News: National Death Index • Broad research benefit • Facilitate survival statistics for cancer registries • 1,568 new applications (1982-2008) • Protection of personal data • All states participating
Cancer Registry Linkage Options NDI-style data aggregation model is not appropriate for state cancer registries • Some patients living • Incompatible data release regulations and policies from state to state
Cancer Research Network (CRN) Model • The Virtual Data Warehouse (VDW) • HMO patient data (including living patients) • a distributed data warehouse • standardized linkage datasets • stored behind separate security firewalls at each participating CRN site
Linkage Coordination Center • Define/maintain input file definition • Coordinate with state registries linkage file definition • Evaluate researcher input file • Distribute researcher input file to state registries (automated) • Review state registry nonconfidential linkage result frequency reports
State Cancer Registries • Prepare annual linkage file • Concurrent with other call(s) for data • Cancer registry retains report of potential matches with researcher records • Deidentified potential match frequency report sent to researcher and Linkage Coordinating Center (automated)
State Cancer Registry Data Release • State-by-state basis (at least initially) including cost recovery • Standardized export file • Adjudication of possible matches (to be determined)
Pooled Linkage Resource:Obvious Benefits • Unprecedented resource for cancer research. • Save years of time. • Researcher time • Registry time • More rapid discovery • Save taxpayer dollars. • Allow a more rigorous and comparable scientific research by adopting a standardized methodology. • Allow some registries to participate in research which otherwise lack the resources.
Progress to Date • 7 states volunteered for demonstration project • Adventist Health Study volunteered • Workgroup meeting by phone • Volunteer state IT and directors • IMS, Inc. (SEER/NAACCR funding) • NPCR informatics (Registry Plus)
Progress to Date • Workgroup developing basic tools • Protocol • Data use agreement • Researcher input file specs • Researcher input file edits • Registry file specs • Will schedule first demonstration project linkage after NAACCR meeting
Final Point… • This process would be convenient method for de-duplication of state registries
Many Thanks to Some Terrific Folks! • Nan Stroup & Kim Herget – Utah • Chris Johnson – Idaho • Andy Lake, Dave Annett, Will Howe – IMS • Kathleen Thoburn, Joe Rogers - CDC • Rich Pinder – Los Angeles • Betsy Kohler - NAACCR