Fall 2018 NAACCR Narrative Leave a comment


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

 

 

As the Fall colors fade and the leaves drop (at least for those of you who live in areas with distinct seasons!), we have limited time for reflection as we are furiously working to ensure the multiple submission are high quality and completed on time.

To this end, you will notice some improvements to the Call for Data (CFD) site this year.  This year, you are able to electronically sign the data agreement as well as the consent forms for annually approved projects. If you are unable to sign electronically, you can still print, sign, scan, and upload the same as last year. We will also accept the signed documents by fax or email, but we encourage you to sign electronically or upload.

Another change to the site is the RRIDB and the CDC IRB Assistance information collection systems have now been merged into the CaRRI database. More information about CaRRI is included in a separate section of this edition of the Narrative.

And CFD again includes the consent for the Public Use Datasets, ACS Facts & Figures, Medullary Thyroid Research, CiNA Plus in SEER*Stat, and Delay Adjustment with no changes. The consent for NAACCR Synthetic Dataset has been updated to allow the training dataset to be larger (from 10,000 synthetic cases to 500,000) and to allow the Synthetic data to be used in NAACCR Trainings without additional consent. We also have a new project with the American Lung Association that is included in the CFD consents.

Please note, NAACCR CiNA data is covered by a Certificate of Confidentiality (CoC) from NIH. Because NIH no longer provides CoC documentation, please contact me if your organization needs additional information. We hope this helps central registries increase data use participation while complying with local policies and regulation.

And once Call for Data is complete, we of course barrel on through to the Annual Conference—and the period between Call for Data and the Annual Conference seems shorter every year. What is not shorter, thankfully, is the length of time for submitting an abstract to our combined NAACCR/IACR Annual Conference in Vancouver, Canada. Abstracts for both student and professional presentations and posters are due on Friday, February 15, 2019—for both international and North American presenters. This year, we have a fully automated abstract submission, review, and scheduling process. Most of the improvements will not be noticeable to abstract submitters, but we welcome your feedback on our new system. Online submission will be open in a few weeks. We are excited to see you all in Vancouver!

Another area of restructuring is the NAACCR IRB. In response to the changes in the Federal Policy known as the Common Rule, we are simplifying the NAACCR IRB requirements for CiNA Data Requests. At the April NAACCR IRB Meeting, we will finalize and approve these changes. I look forward to providing the specifics then.

 

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