Bhargav, thanks for these notes. I think it's worth sharing them with all of
gpc-dev.
I'm curious about feasibilty info from other sites on things such as living
situation.
Vince, any other info we can get that would help you out?
--
Dan
________________________________________
From: GPC Informatics [d...@madmode.com]
Sent: Thursday, November 12, 2015 11:51 AM
To: Dan Connolly; Vincent Leonardo; Bhargav Adagarla; Tamara McMahon
Cc: Brittany Zschoche
Subject: Re: [gpc-informatics] #380: Collect ALS survey data, EMR data from
participating sites
#380: Collect ALS survey data, EMR data from participating sites
--------------------------+------------------------------
Reporter: dconnolly | Owner: vleonardo
Type: task | Status: assigned
Priority: major | Milestone: cohort-char-als
Component: data-sharing | Resolution:
Keywords: als-cohort | Blocked By: 245, 284
Blocking: |
--------------------------+------------------------------
Comment (by badagarla):
Rough Notes from meeting with Vince, Tamara and Statland:
Data Elements for "consented survey respondents":
- All of the survey data
- Date of diagnosis is in the survey response
- Symptom onset date is in the survey response
- Basic demographics from all sites
- Gender (Must have)
- Current age (Must have)
- Date of Birth would be a nice to have.
- Race
- Ethnicity
- Living Situation is a proxy for understanding marital status
- Not sure
- occupation
- Are they employed
- What are they employed as?
- years of education
- Not sure.
- Language
- Religion
Next Steps:
- Try to create the data set here at KUMC.
- Data Request needed?
- Then create directions for the other sites.
--
Ticket URL:
<http://informatics.gpcnetwork.org/trac/Project/ticket/380#comment:6>
gpc-informatics <http://informatics.gpcnetwork.org/>
Greater Plains Network - Informatics
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