NORSE Community: We ask for your input.


We are looking for participants to engage in research related to communication in the ICU care of NORSE (including FIRES). This research is being conducted by providers who care for patients with NORSE in collaboration with the NORSE Institute. 
Who we need
·       Parents of patients with NORSE (surviving patients or deceased)
·       Caregivers of a family member with NORSE


How to contribute
·       Participate in a 10-15 minute survey by rating opinions/views on communication in the hospital setting in the care of your family member with NORSE.
·       Providing a short response regarding individual, particular concerns related to communication in the care of your family member with NORSE (please do not include identifying information).

Why this matters
·       Your input will be used to help us better understand particular barriers or points of concern related to communication in the care of patients with NORSE in the ICU.
·       We hope with this information, we can provide better education to the medical community and address particular concerns related to difficulties in communication in the care of NORSE.

Participation in this survey is voluntary, and you can choose not to participate. Proceeding with the survey implies your consent to participate in this study related to communication in the care of NORSE. This survey is being collected by providers who care for patients with NORSE along with the NORSE Institute.  For more information regarding the survey, please contact kristenf@bcm.edu.

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