Is the Level of Consent to a National Research Registry Associated With Patient Outcomes After Traumatic Spinal Cord Injury? A Population-Based Study From the Rick Hansen Spinal Cord Injury Registry

This study looks at whether patients who fully participate in a spinal cord injury registry have different outcomes than those who don't. The researchers used data from the Rick Hansen Spinal Cord Injury Registry to compare patients who gave full consent to data collection with those who declined some parts of it. The study found that patients who didn't fully participate in the registry had longer hospital stays, more complications like pneumonia and pressure injuries, and were less likely to be discharged home. This suggests that patients who are less engaged with research may also have poorer health outcomes. The researchers suggest that healthcare providers should be aware that patients who don't fully participate in research may be more vulnerable and need extra attention. They also highlight the importance of being transparent about how patient registries work and interpreting their findings carefully.

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  Participants who declined community follow-up interviews but accepted minimal data collection had significantly longer acute length of stay compared to those who provided full consent.
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  Participants who declined community follow-up were more likely to develop pneumonia or pressure injuries during acute care.
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  Participants who declined community follow-up were significantly less likely to have home as their final discharge destination.