All, Here is the information on the ALS data request for survey and EMR data as discussed on the GPC-Dev call. Attached is a description of the search and output criteria. The query builds upon the original ALS query and is located on Babel: Shared\ALS cohort characterization\GPC ALS Cohort 20160331
This request includes items that may not be available at all sites, such as Occupation. Please upload what is available at your site. If your institution has the ALS Functional Rating Scale information for consenting patients, please contact Sravani Chandaka (copied) and Tamara. That information will be collected separately from the other data. This is a limited data request: No PHI other than real dates. Instructions for uploading into REDCap are found in ticket 380<https://informatics.gpcnetwork.org/trac/Project/ticket/380#comment:16>. I am adding all the honest brokers and gpc-dev contacts to the REDCap project Data Access Group for their institution which will allow for import capabilities. If you do not have access to the REDCap project, but should, please contact Sravani and Tamara. Bhargav and Sravani have agreed to meet with each site to walk through the process if desired. Please contact them directly to schedule a time. Deadline: Aim for July 21, which is very aggressive. If you need an extension, please let Sravani and I know. Regards, Tamara McMahon Director, Engineering & Product Experience Medical Informatics, University of Kansas Medical Center
ALS Inclusion and Exclusion for data.docx
Description: ALS Inclusion and Exclusion for data.docx
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