FYI, prompted by a visit from Brad Pollock, we've had some good cohort 
characterization discussions in the last couple days. I'm keeping ticket #31 
reasonably up-to-date; for example:

________________________________________
From: GPC Informatics [[email protected]]
Sent: Wednesday, July 02, 2014 10:28 AM
To: Dan Connolly
Cc: [email protected]; Russ Waitman; Kieran Pemberton; Jianghua He; 
[email protected]
Subject: Re: [gpc-informatics] #31: data elements for ALS cohort 
characterization

#31: data elements for ALS cohort characterization
--------------------------+----------------------------
 Reporter:  dconnolly     |       Owner:  dconnolly
     Type:  design-issue  |      Status:  accepted
 Priority:  major         |   Milestone:  data-domains2
Component:  data-stds     |  Resolution:
 Keywords:                |  Blocked By:  63
 Blocking:                |
--------------------------+----------------------------
Changes (by dconnolly):

 * owner:  tmcmahon => dconnolly
 * status:  assigned => accepted


Comment:

 I discussed this with Tamara. I hope to talk with Dr. Barohn and the ALS
 group about how initial onset is recorded.

  - Demographics are easy enough
  - We don't know what to use for **initial symptom onset**, let alone
 **location**
  - ALSFRS-R is deployed, though only recently, so it's recorded only on a
 small minority of the KUH ALS population
  - There's a Drooling Scale question in the ALSFRS-R
  - `003- #7855 $$ Vital Capacity (mL)` recorded on ~10K patients
  - not sure how to find Neuromuscular Examinations
    - perhaps Neurology procedure orders (~10K patients)
      - EMG ORDER (~3K patients)
  - physical examination: CPT codes such as 99396 look appropriate:
    - Preventive Medicine Services
      - Counseling Risk Factor Reduction and Behavior Change Intervention
      - Preventive Medicine Services for an Established Patient
      - Preventive Medicine Services for a New Patient
  - Vital signs: straightforward

--
Ticket URL: 
<http://informatics.gpcnetwork.org/trac/Project/ticket/31#comment:11>
gpc-informatics <http://informatics.gpcnetwork.org/>
Greater Plains Network - Informatics
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