Spring/Summer 2019 NAACCR Narrative Leave a comment


Recinda Sherman, MPH, PhD, CTR
NAACCR Program Manager of Data Use and Research
rsherman@naaccr.org

 

 

Research & Data Use

Vancouver was a wonderful meeting with the opportunity to meet with colleagues around the world. We have many of the posters and oral presentations uploaded on our website (https://www.naaccr.org/naaccr-iacr2019/). If you find yourself thinking back fondly on a particular presentation, please contact me (rsehrman@naaccr.org) to nominate it for a NAACCR Talk. And you can review the poster winners here: NAACCR / IACR 2019 Awards

But the cool nights of Vancouver are merely faded memories as we move full speed toward the Call for Data frenzy. Many of us are also wrapped up in the dog days of summer and back to school prep. For me personally, I am preparing for an empty nest as my daughter heads off to college (which feels a little like the process of moving away from our flat file to XML—it is inevitable, it is moving towards the future…but can’t we have just one more year the way it was!).

Call for Data Update

Call for Data is brewing and updated materials will be on the Call for Data section on our website for updated information and tools after September 1: https://www.naaccr.org/call-for-data/. See below for the Call for Data Webinar. Please ensure at least one representative from each registry attends this webinar. The webinar will be recorded.

Data Confidentiality & Security Update

The Data Confidentiality & Security Taskforce is charged with developing, disseminating, and maintaining up-to-date information on confidentiality and security practices for the NAACCR community. To this end, we strongly encourage each registry to participate in an upcoming survey of current data security and confidentiality practices among central registries. A version for US registries is expected to be distributed in mid-August with a Canadian version soon to follow.

Data Request Tracking System Update

A beta-version of the Data Request Tracking System is schedule to be released this fall. This system will be used by outside researchers to request CiNA data as well as by the NAACCR community to request access for their own their delay-adjusted data and any data needed for NAACCR workgroup or taskforce work. Registries will also be able to complete CiNA data consents and track their history in this system. Accessing CiNA data will be more efficient for everyone, and I am grateful to our IMS partners who are working with me to develop this system.

New CiNA Volume 5: Prevalence 

Work has begun on CiNA Monography Volume 5: Prevalence, spearheaded by Chris Johnson from the Cancer Data Registry of Idaho. We will be sending a notification to all registry directors and, later in the process, we will inform registries of their inclusion/exclusion status in this volume prior to publication. CiNA Volume 5: Prevalence will include national-level data for US and Canada as well as limited state/provincial data. We anticipate the first CiNA Volume 5 being published before in or before October 2019, and subsequent years all 5 CiNA Volumes will be published together in the spring. After the volume is released, we will be holding a webinar to provide registries the tools to calculate both survival and prevalence on their own data, using the methods applied in the CiNA volumes.

Upcoming Webinars

  1. Geocoding Instructional Webinar: August 21, 2019, 2pm EST

This webinar will introduce users to NAACCR Geocoder Updates, including:

    • How to create and use an Alias Table to improve data quality and reduce the number of manual matches
    • How to use the new Micro Match Status data quality variables and advanced search options, and a new NAACCR Manual Geocoding Interface
    • General operational guidelines
  1. Call for Data 1995-2017 Instructional Webinar: September 4, 2019, 2pm EST

This webinar will include review and present updates to this year’s Call for Data process including:

    • New data times, Updates to Data Assurance Agreements and Consent Forms
    • On-line submission procedures
    • NAACCR Prep changes
    • CFD Edits
    • Other CFD tasks (VPR submission, CaRRI, registry contact updates)
  1. Cancer in World Trade Center Rescue Recovery Workers: Past Findings, Current Research, and the Future: September 11, 2019, 2pm EST
    As we reflect on this day in history, we will present a webinar covering historic and current results of studies of the increased cancer burden among 9/11 rescue worker.
  1. Calculating Registry-Specific Survival and Prevalence Using the NAACCR CiNA Method Data TBD but anticipated late September/early October 2019

This webinar will provide the basic tools registry analysts need to calculate registry-specific survival and prevalence estimates using the NAACCR CiNA methodology. Prepared datasets will be available to registries to compare their estimates with national-level estimates. However, only registries included in the CiNA Survival or CiNA Prevalence volumes (based on level of follow-up available) will have their data available for analysis.

 

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