Clinical patient registry recruitment and retention: a survey of patients in two chronic disease registries

Table 2 Motivations for participation and preferences for survey completion

	BRASS (RA) mean ± SD	BrITR (IBD) mean ± SD	p-value
What motivated you to participate in BRASS/BrITR? Please rank the top 3^a
My doctor convinced me to	0.8 ± 1.1	0.7 ± 1	0.66
A family member or friend convinced me	0.0 ± 0.1	0.1 ± 0.4	0.01
My desire to help others	2.3 ± 1	2.4 ± 0.9	0.47
I hoped it would help me take care of my RA/IBD	1.0 ± 1.1	1.2 ± 1.2	0.21
It was easy to volunteer	0.9 ± 1	1.0 ± 0.9	0.03
I like the gifts (pens, magnets, parking, etc.)	0.0 ± 0.3	0.1 ± 0.4	0.08
The research assistants are nice	0.1 ± 0.4	0.2 ± 0.5	0.41
What would increase your willingness to remain in BRASS/BrITR? Please rank the top 3^a
Free parking	0.7 ± 1.0	0.4 ± 0.8	0.009
Fewer questionnaires	0.4 ± 0.9	0.3 ± 0.8	0.65
Getting paid to answer surveys	0.4 ± 0.8	1.0 ± 1.2	<0.001
Getting feedback on my answers	0.9 ± 1.2	1.0 ± 1.2	0.28
Getting general information on my condition	0.9 ± 1.0	1.0 ± 1.2	0.71
I will stay enrolled no matter what	1.4 ± 1.3	1.3 ± 1.3	0.64
What are your preferred methods of completing surveys? Please rank the top 3^a
Paper surveys mailed home	2.1 ± 1.2	0.3 ± 0.6	<0.001
Paper or tablet surveys at clinic	0.9 ± 1.1	0.6 ± 0.9	0.001
Phone survey	0.2 ± 0.5	0.1 ± 0.4	0.23
E-mail survey	1.1 ± 1.1	2.1 ± 1.0	<0.001
Internet survey	0.8 ± 1.1	1.9 ± 1.1	<0.001
Survey using a PDA (application)	0 .2 ± 0.5	0.9 ± 1.0	<0.001

^aTo allow for easier comparison across items and across registries, we created a score from 0 to 3, where 0 signified no ratings of an item in the top 3, and 3 signified the top rated item across all respondents. The ratings were 3 = most important, 2 = second most important, and 1 = third most important. For items not rated in the top 3, zero was assigned. Abbreviations: RA rheumatoid arthritis, IBD inflammatory bowel disease. P-values calculated using Kruskal-Wallis tests

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