Q. How to give a new person access to info on the TBINDC website?
A. Your project director adds/removes your Model System's staffs' access to the members' section of the TBINDC website. Project directors have access to a special screen on the website for doing this.
Q. Sometimes we have a participant who is still in inpatient rehab when his/her Form I data are due to be submitted. This happens when the person is injured near the end of a quarter and requires lengthy acute hospital and inpatient rehab stays. Because we are not able to collect discharge data on these patients by the time their Form I data are due for submission, we submit them with considerable missing data. Although all the missing data are collected and submitted the following quarter, if the Missing Data Report comes out based on the quarter when these data were missing, then our figures in the Missing Data Report are worse than is actually true. Could the NDC create a code for these cases and use the code to exclude them when doing the calculations for the Missing Data Report?
A. The TBINDC would prefer to handle these cases manually rather than create a special code. If centers will notify us when such cases are being submitted we will filter them out of the database before we run the Missing Data Report.
Q. I have been receiving an error message when I attempt to open the Interventions section in Form I. It says "TBIMS v. can't move focus to the control SO m." It then offers some suggestions of how to fix the problem. When I click "OK," another message appears which begins like this: Action Failed. Macro Name: Form I: Goto Interventions Form. At that point, I click "Halt." The screen still appears with my data but I do not have editing access to the first portion of it.
A. This problem occurs when editing a case, if you neglect to enter the version number (e.g., 9.6) of the data collection form on which the data for the case in question was originally entered. In order to avoid this problem, a version number MUST be entered EVERY time you open a case for editing -- EVEN IF the correct version number is already displayed in the box when the case first opens for editing.
Q. How can I view data that was submitted on a version of the Form I that is too old to be listed in the pulldown menu for "version being entered"?
A. Select the oldest version (lowest number) on the pulldown menu. Unless your Form I is so old that it has variables that were no longer in the database at the time of the oldest version in the pulldown menu, all the data in your Form I will display on the screens.
Q. If it's a "live syllabus", what is the rationale for the NDC expectation that the individual centers keep a hard-copy binder?
A. When we moved to the live syllabus, there was concern that syllabus information would be needed at times when people didn't have access to a computer or to the website. So the syllabus binders were kept on.
Q. We have a few follow-ups that we were unable to do during the data collection window. Some of the data that we need for these follow-ups was collected by clinicians for clinical purposes during the window. Is it okay if we use that data?
A. Yes, you may use that data as long as you are able to confirm that the data are appropriate and high quality. (Added to 9c.Guidelines for collection of follow-up data.)
Q. I [a TBIMS researcher] was wondering how centers are handling requests from participants to release research data to clinicians for their continuing clinical care. We have a participant who was assessed with our neuropsych testing battery a few years ago and now wants to have those raw tests released to their neuropsychologist for comparative purposes to current testing. Do others of you release raw data collected strickly for research for this purpose?
A. A number of centers responded to this question. All said that they release research data to clinicians and health care providers. You may need to obtain a release from the participant in order to release to clinicians. Most consent forms state that the individual is able to see their data. One center said they are uncomfortable releasing to the participant because they are not trained in interpreting the results, and recommends that they obtain a clinical assessment. One center releases to clinicians with the caveat that the data were collected for research purposes and therefore may have been collected somewhat differently than clinical data. One center said that after they explain the research conditions under which the tests were administered, clinicians generally withdraw the request.
Q. How should the new "4" code in V20Ab and V20Ac be used?
A. The "4" code should be used only when (a) data could not be obtained by TBIMS data collectors (or their proxies) from any source during the follow-up window, and (b) data that are appropriate for entering into the Form II were collected elsewhere during the follow-up window and became available to TBIMS data collectors after the follow-up window had closed.
Q. We just got consent on an old case (2004; it's now 2006) to include in the national database. Should we submit the Form I on the version of the form that corresponds to the admission date or on the current 10.0 form?
A. Use the version of the data collection form that corresponds to the time that the data were collected for this old case, and enter the data through the data entry screens that have the same version number as that form. The data entry screens are designed to allow data from any of the versions of the forms listed in the pulldown menu (at the start of the data entry screen) to be entered as they are, without changes. EXCEPT THE ALCOHOL USE VARIABLES. For the alcohol variables a warning message will appear notifying that the codes for "refused" and "unknown" have been reversed in newer versions of the Form I and Form II and must therefore be reversed if they are in data being entered from older forms.
Q. I would like to do research with a variable that is no longer collected. How can I get access to that data?
A. The variable is still in the database. The database that we provide to PIs includes all data for all variables whether they are currently collected or not.

Traumatic Brain Injury Model System National Database Live Syllabus V10.3
Wednesday, August 16, 2006 3:07am  .   comments/questions?
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