Enhancing Registry-Based Research: A Virtual Pooled Data Resource Dennis Deapen, DrPH NAACCR, Austin, TX June 13,

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

Central registry-based research should support:  Population-based research  Post marketing surveillance  Rare tumors research  Rare exposure research  Multi-state or national cohort studies 4

 Currently, accessing each individual state cancer registry “silos” is:  Costly  Administratively complex  Time consuming We’re the barrier! 5

6 Adventist Health Study-2 (NAACCR conference 2010)  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

7 Adventist Health Study-2  Now 45 states  8 years What if they could have linked with 50 states- overnight?!

 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 8

 Broad research benefit  Facilitate survival statistics for cancer registries  1,568 new applications ( )  Protection of personal data  All states participating 9

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 10

 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 11

12

1. Define/maintain input file definition 2. Coordinate with state registries linkage file definition 3. Evaluate researcher input file 4. Distribute researcher input file to state registries (automated) 5. Review state registry nonconfidential linkage result frequency reports 13

14

1. Prepare annual linkage file a. Concurrent with other call(s) for data 2. Cancer registry retains report of potential matches with researcher records 3. Deidentified potential match frequency report sent to researcher and Linkage Coordinating Center (automated) 15

16

1. State-by-state basis (at least initially) including cost recovery 2. Standardized export file 3. Adjudication of possible matches (to be determined) 17

18

 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. 19

1. 7 states volunteered for demonstration project 2. Adventist Health Study volunteered 3. Workgroup meeting by phone a. Volunteer state IT and directors b. IMS, Inc. (SEER/NAACCR funding) c. NPCR informatics (Registry Plus) 20

1. Workgroup developing basic tools a. Protocol b. Data use agreement c. Researcher input file specs d. Researcher input file edits e. Registry file specs 2. Will schedule first demonstration project linkage after NAACCR meeting 21

 This process would be convenient method for de-duplication of state registries 22

 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 23