Fall 2018 NAACCR Narrative Leave a comment

NAACCR is proud to introduce you to CaRRI, the newest addition to our family! The Cancer Registry Researcher Information (CaRRI) database is designed to collect pertinent information on registry and IRB processes and requirements for requesting, releasing, and using registry data. The CaRRI database captures up-to-date, detailed information on the following:

  • Registry, IRB, and VPR contact information
  • Data years available and registry participation in various types of studies
  • IRB and registry application and review process (with URLs)
  • Requirements for data destruction, publication review, DUA, and progress reports
  • Requirements for physician and patient consent
  • Summary of registry and IRB fees

The CaRRI database consolidates information previously collected within CDC’s IRB Assistance site and NAACCR’s Researcher Registry Information Database. When designing the new database, NAACCR worked closely with IMS, Inc. to develop a user-friendly system that eliminated redundancies between the two systems, minimized narrative text, provided standard drop-down responses, and incorporated other key data items of interest to researchers and the Virtual Pooled Registry (VPR).

All registries, including the Canadian Provinces, are asked to populate the CaRRI database as a part of the NAACCR Call for Data process. Data should be entered between December 1, 2018, and January 31, 2019, after data submissions are complete. However, registries may begin entering data as early as November 1, 2018, when the CaRRI database is made available alongside the NAACCR Call for Data Submission Site (see screenshot below). Active users with an assigned role of ‘Registry Administrator’ for the Call for Data Submission can access the CaRRI database using their MyNAACCR login credentials.

After registry responses have been reviewed, data will be made publicly available for query and report generation. The CaRRI database will benefit both researchers and registries alike. Not only will it eliminate the need for researchers to contact each individual registry, it will also allow the registry to maintain, and refer researchers to, a single location that summarizes requirements for data requests.

Questions about the CaRRI database can be addressed to Recinda Sherman (rsherman@naaccr.org ).

 

 

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