#31: data elements for ALS cohort characterization
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Reporter: dconnolly | Owner: jhe
Type: design-issue | Status: assigned
Priority: major | Milestone: data-agg1
Component: data-stds | Resolution:
Keywords: als-cohort methods-core | Blocked By: 63
Blocking: |
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Comment (by jhe):
Drs Jeffrey Statland, John Chen, Scott Koertner, and Wendy He had a
meeting this afternoon, discussing the progress of the ALS cohort
characterization and future steps. Jeff gave a lot insignts on what would
be interesting information for this patient population. He will come up
with a list of prioritized variables for data query. Besides demographics,
stand of care will be the focus of the list.
Some trivial notes
Demographic variables (of particular interest):
occupation (employed or not)
Livng situation (along or live with others, marital status) (found
this variable in Heron but not many patients have the information)
Economic status (may come from insurance information)
Standar of care
Medication (Only one FDA approved medication for ALS, but there
are many medicaitons for specific symptoms, such as drooling, muscle
spasm.
Device: bipap
Found ALSFRS in flowsheet and Pba (pseudo bulbar) score. Jeff will
find out when the clinic started using these scales.
Others
Jeff thougt that the 1900+ ALS cases in Heron is more than
expected. (more than half of them are dead though. But the 800 alive ones
are also more than expected based on the patients seen in the clinic)
John mentioned that a patient need to have at least 2 ALS
outpatient encounters be be qualified as a ALS patients (this may reduce
the patient volumn)
Jeff mentioned that it is important to find out what happended to
patients before they were diagnozed with ALS (This is regarded as research
question that we can work on later)
Although there is no specific diagnosis date for ALS in Heron. It
would be interesting to show the distribition of the time difference
between first ALS encounter and time of death. The expected median is 3
years.
--
Ticket URL:
<http://informatics.gpcnetwork.org/trac/Project/ticket/31#comment:20>
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Greater Plains Network - Informatics
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