Representing CDEs in the Dug Data Model v2

[gaurav]

Here is my current attempt at representing CDEs in the Dug Data Model v2. Any suggestions or feedback welcome! This is the PCL5 CRF ("pcl" on the HEAL CDE repo, DOCX file, XLSX file).

{
  "type": "section",
  "id": "HEALCDE:pcl-5",
  "name": "pcl-5",
  "description": "The PTSD Checklist for DSM 5 (PCL 5) is a 20-item self-report measure that assesses the 20 DSM-5 symptoms of PTSD. Contains 25 CDEs.",
  "action": null,
  "is_crf": true,
  "variable_list": [
    {
      "type": "variable",
      "id": "PCL5rptDisturbMemoryScl",
      "name": "PTSD Checklist for DSM-5 (PCL-5) - repeated disturbing memories scale",
      "data_type": "text",
      "question_text": "Repeated, disturbing, and unwanted memories of the stressful experience?",
      "permissible_values": [
        {
          "value": "0",
          "description": "0 = Not at all"
        },
        {
          "value": "1",
          "description": "1 = A little bit"
        },
        {
          "value": "2",
          "description": "2 = Moderately"
        },
        {
          "value": "3",
          "description": "3= Quite a bit"
        },
        {
          "value": "4",
          "description": "4 = Extremely"
        }
      ],
      "is_standardized": true,
      "other": {
        "question_number": 1,
        "definition": "Scale of bother from repeated disturbing memories of a stressful experience, as part of the PTSD Checklist for DSM-5 (PCL-5)",
        "short_description": "PCL5 scale of repeated disturbing memories of stressful experience",
        "crf_name": "PTSD Checklist for DSM-5 (PCL-5)",
        "references": "Weathers, F. W., Litz, B. T., Keane, T. M., Palmieri, P. A., Marx, B. P., & Schnurr, P. P. (2013). The PTSD Checklist for DSM-5 (PCL-5) – Standard [Measurement instrument]. Available from https://www.ptsd.va.gov/ "
      }
    }]
}

Let me know if you need more questions!

[hina-shah]

This is how I would envision it being encoded:

[
{
  "type": "section",
  "id": "HEALCDE:pcl-5",
  "name": "pcl-5",
  "description": "The PTSD Checklist for DSM 5 (PCL 5) is a 20-item self-report measure that assesses the 20 DSM-5 symptoms of PTSD. Contains 25 CDEs.",
  "action": null,
  "is_crf": true,
  "variable_list": [ "PCL5rptDisturbMemoryScl"]
},
{
      "type": "variable",
      "id": "PCL5rptDisturbMemoryScl",
      "name": "PTSD Checklist for DSM-5 (PCL-5) - repeated disturbing memories scale",
      "data_type": "text",
      "parents": ["HEALCDE:pcl-5"],
      "description":  "Scale of bother from repeated disturbing memories of a stressful experience, as part of the PTSD Checklist for DSM-5 (PCL-5)"
      "is_standardized": true,
      "metadata" : {
          "permissible_values": [
            {
              "value": "0",
              "description": "0 = Not at all"
            },
            {
              "value": "1",
              "description": "1 = A little bit"
            },
            {
              "value": "2",
              "description": "2 = Moderately"
            },
            {
              "value": "3",
              "description": "3= Quite a bit"
            },
            {
              "value": "4",
              "description": "4 = Extremely"
            }
          ],
       "question_text": "Repeated, disturbing, and unwanted memories of the stressful experience?",
        "question_number": 1,
        "short_description": "PCL5 scale of repeated disturbing memories of stressful experience",
        "crf_name": "PTSD Checklist for DSM-5 (PCL-5)",
        "references": "Weathers, F. W., Litz, B. T., Keane, T. M., Palmieri, P. A., Marx, B. P., & Schnurr, P. P. (2013). The PTSD Checklist for DSM-5 (PCL-5) – Standard [Measurement instrument]. Available from https://www.ptsd.va.gov/ "
        }
    }
]

[gaurav]

Sounds good! Do we want to universalize the variable names (e.g. HEALCDE:pcl-5#PCL5rptDisturbMemoryScl) in case the variable shows up multiple times? Hopefully we'll have data dictionaries that include PCL5rptDisturbMemoryScl as well.

[gaurav]

Also: I have multiple URLs for each CRF, for example, HEALCDE:scs-sf has URLs to:

• scs-sf-crf.docx (the Word version of the CRF)
• scs-sf-crf-spanish.docx (the Word version of the CRF, but in Spanish)
• scs-sf-cde.xlsx (the Excel version of the CRF, where we get the variable entries for)

How best can I add that information to the CRF?