#31: data elements for ALS cohort characterization -------------------------------------+------------------------ 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: | -------------------------------------+------------------------
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> gpc-informatics <http://informatics.gpcnetwork.org/> Greater Plains Network - Informatics _______________________________________________ Gpc-dev mailing list Gpc-dev@listserv.kumc.edu http://listserv.kumc.edu/mailman/listinfo/gpc-dev