Interesting... can you point us to the materials that the Cancer CRG developed?
I'm still working with the design I shared March 19.
https://informatics.gpcnetwork.org/trac/Project/attachment/ticket/749/tumor_data.sql
I haven't worked on the duplicate issue but I included it in a list of
pcornet-related issues
https://github.com/kumc-bmi/naaccr-tumor-data/labels/pcornet
--
Dan
From: Gpc-dev on behalf of McDowell,
Bradley D
Sent: Friday, May 1, 2020 7:51 AM
To: ''
Subject: tumor table
Quick summary: We’re looking for volunteer sites to implement the PCORnet tumor
table and provide case-level data on potential duplicates.
Hello everyone,
The PCORnet Cancer Collaborative Research Group developed a tumor table that
was approved by the PCORnet Data Committee as an optional addition to the CDM.
We have been working with the table here at the University of Iowa before
widely disseminating the specifications. These experiences have led to several
improvements, and they have also motivated us to deal with one of the central
problems with the underlying institutional tumor registry data: duplicate
records. Registries often generate multiple records for the same tumor when new
case information is found, and these records are hard to distinguish from true
multiple primary cancers. This problem has had serious implications for two GPC
studies that used the tumor registry data.
Using data from the UI tumor registry, we have developed guidance for dealing
duplicate records. It is difficult to know, however, if this guidance only
applies to UI data or if there are other problems that will reveal themselves
when other sites implement the tumor table specifications. We are looking for
sites to volunteer to:
1. Implement the tumor table and provide feedback to the Cancer CRG
2. Run a SAS query that will provide data on potential duplicate records.
The query will generate a case listing to share with the Cancer CRG that
identifies differing values across records for the same patient. This will be
used to develop further guidance for dealing with duplicate records and improve
the GPC data infrastructure; it will not be used for research.
An optional DROC request will be forthcoming, but I wanted to send this message
in advance to see if there were any concerns. Please contact me if you have any
questions or if you might be interested in participating. I’m happy to talk
about this at our weekly conference call if that would be helpful.
Thank you,
Brad
Bradley D. McDowell, Ph.D.
Director, Population Research Core
Holden Comprehensive Cancer Center
5240 MERF | The University of Iowa | Iowa City, IA | 52242
Office: 319-384-1768
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