(I presume it's OK to bring this discussion back on the public record by adding gpc-dev@listserv.kumc.edu to the cc list.)
Putting this on the informatics group's todo list at this late stage is not straightforward. We started collecting data elements for ALS work at the first hackathon in Feb 2014 (#31<https://informatics.gpcnetwork.org/trac/Project/ticket/31>); at this point, we're trying to polish up work on the data elements we identified months ago. Somebody involved in the ALS work would need to explain the importance of this data to the research, do a survey of what the sites have (using babel.gpcnetwork.org), lay out design options, and guide the group to a common solution. By way of example, #243 procedures<https://informatics.gpcnetwork.org/trac/Project/ticket/243> has such requirements, survey, and design options. We planned to do procedures all along; we're just now reconciling approaches across the sites. The most recent requirement I can remember adding was BMI percentile (#210<https://informatics.gpcnetwork.org/trac/Project/ticket/210>), and that discussion started at least 3 months ago. Alex Bokov represented the requirements of the GPC obesity group and continues to guide the group to a technical solution. I don't mind throwing the question(s) out there: who has this data in their EMR? In i2b2? A prefered design? ETL code to share? Estimates of how long it would take at your site or another site? for reference: https://informatics.gpcnetwork.org/trac/Project/ticket/245 -- Dan ________________________________ From: Laura Herbelin Sent: Tuesday, March 10, 2015 9:32 AM To: Kieran Pemberton; Dan Connolly Subject: RE: living situation, occupation, and years of education data for ALS analysis? Hi Dan and Kieran, I spoke with Dr. Statland. He stated that living situation, occupation and years of education are actually available on EPIC. He thought that maybe it might not be activated at our site or other sites as well, which means that we will not be able to capture that information. Can you confirm with other sites if they have access to that information? Laura From: Kieran Pemberton Sent: Tuesday, March 03, 2015 12:54 PM To: Laura Herbelin Subject: FW: living situation, occupation, and years of education data for ALS analysis? Hey Laura, Can you take a look at this for Dan? Thanks Kieran From: Dan Connolly Sent: Tuesday, March 03, 2015 12:25 PM To: Kieran Pemberton; Bhargav Adagarla Subject: living situation, occupation, and years of education data for ALS analysis? Can you shed any light on ticket:31#comment:31<https://informatics.gpcnetwork.org/trac/Project/ticket/31#comment:31> of Feb 9? In section 5.0 Data management and case report forms of the protocol (attached to #208<https://informatics.gpcnetwork.org/trac/Project/ticket/208>): The following EMR data will be included for analysis: age, gender, race, ethnicity, living situation, occupation, and years of education. I don't know where living situation, occupation, and years of education are expected to come from. They're not on the current survey draft, and they're not in any of the currently planned GPC ontologies. -- Dan
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