The MS Data Collection Definition (HDBP0070)

Last updated: 2025-04-30 14:48

In the file below you can find the Data Collection Definition (DCD) specifications of the project MS. It is a detailed description of the content of twelve DCD's:

  1. Identification: should be completed for new patients. The information should be updated if:
    • an existent patient died (fields: “Death” and “Date of death”, “Death cause”).
    •  the employment status changed.
    • progression from onset changed from “no” to “yes”.
    • a patient got lost to follow-up.
  2. Medical conditions: should be completed for each new comorbidity. The information should be updated if the outcome of the comorbidity has changed (“Recovery”, “Ongoing”, “Fatal”, “Unknown”).
  3. Family History
  4. Visits: should be completed at each new visit.
  5. Relapses: should be completed if a person with MS suffered a relapse.
  6. Treatments: should be completed for MS-specific and symptomatic treatments. If new medications are taken as compared to the previous visit a new Treatments form should be completed. The Treatments form should be updated if medication is no longer taken anymore (“End date medication” and “Reason End/discontinuation”)
  7. SAE’s: should be completed in case the patient suffered a serious adverse event.
  8. Laboratory: should be completed when laboratory tests were done (blood: JCV antibodies, lymphocytes; Cerebrospinal fluid: oligoclonal bands, IgG).
  9. Pregnancies: should be completed in case of an active pregnancy (not for pregnancies in the past). The Pregnancies form should be updated if:
    • delivery status changed.
    • there was a miscarriage/termination.
  10. Initial MRI: should be completed for the first MRI registered.
  11. New MRI: should be completed for a new MRI (all MRI’s after the first one).
  12. Neuropsychology: should be completed when a SDMT assessment was done.

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with field names, formats, code values (including general code lists), validation rules, help texts, error messages, translations... These specifications were used to build the forms, csv's, and API's for this project, which you can also find in this project manual.

In addition to this, more detailed information about the codes and the formats used for the Author group, SSIN code, status, "Date" - "Date:Time", repeatable fields and multiple choice fields is available here

  • [insert DCD]
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