The Community Voices in Research registry is community powered and collects information about what it is like to live with a bleeding disorder from those who know these conditions the best: lived experience experts. This research describes a sample of males and females comparing the amount of time that passed between their age at first symptoms and their age at the time of diagnosis. We have found that females tend to experience a greater time to diagnosis than males in the CVR registry, which is statistically significant for all diagnoses except VWD. The time to diagnosis appears to be decreasing for younger generations of women compared to their older counterparts. In terms of race, White males were more likely than non-White males to have a time to diagnosis of under one year, but no difference was found for females. For ethnicity, Hispanic males were more likely to have a time to diagnosis of under one year than non-Hispanics, but no difference was found for females.
Awarded/Presented
Tags
N/A
CVR
Researchers
Maria E Santaella, PhD(c), MSN, RN-BC; Samantha A Carlson, LMSW; Paxton Mills; Marissa Johns; Cynthia Nichols, PhD