Data Access and Collection


The future of Multiple Sclerosis Research is in YOUR hands

 

Data Access and Collection
 

There are 2 ways NARCOMS can provide data to researchers. NARCOMS should be contacted prior to submission of a Letter of Intent for research grants. If NARCOMS is not contacted prior to submission, NARCOMS reserves the right to decline review of the proposal. The Researcher Information Form will need to be completed for initial review of either of the methods listed below:

Data Collection:

  • For more detailed or in depth questions to participants (not regularly asked in biannual NARCOMS Update).
  • Either as a separate survey or part of our biannual questionnaire (length restrictions apply).
  • Sent via mail or online survey
  • Study must be IRB approved
  • No marketing contacts allowed (e.g. selling walking aides, assistive devices, etc.)

Data Analysis:

  • De-identified datasets to answer specific research questions or NARCOMS team will conduct data analyses on research questions or requested topics in collaboration with researchers.
  • Project is reviewed and approved by NARCOMS
  • Preliminary inquiries for feasibility or funding purposes can be done in advance
  • Data is de-identified and delivered securely.
  • Can only be used for stated purposes.
  • Manuscript review by NARCOMS before publication

NARCOMS is:

  • For Multiple Sclerosis Research
  • Participant Driven
  • Free to Enroll
  • Confidential

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