Table 3.

Participation rates by study and associated participation rates

Study	Eligible	Approached	Responded	Active consent	Active decline	No response	Not approached	Participation rate (%)
Al-Shahi 2005w2	187	131	111	111	0	20	56	59.4
Bryant 2006w4	11 865*	11 865	11 865	11 525	338	0	0	97.1
Buckley 2007w5	1383†	1269	876	574	302	393	114	41.5
Dunn 2004w7	33 101	33 101	22 644	18 172	4472	11 239	0	53.6
Edlund 1985w8	93	93	93	40	53	0	0	43.0
Harris 2004w10	2843‡	2276	1704	1565	139	572	567§	55.0
Huang 2007w11	15 413¶	15 413	15 413	13 504**	1909	0	0	87.6
Jacobsen 1999w12	2463	2463	2023	1941††	82	440††	0	78.8
Klassen 2005; healthy childrenw13	691	592	393	274	119	199	126	38.2
Klassen 2005; NICUw13	2098	1692	1140	832	308	552	529	37.5
Matsui; genetic 2005w15	2195	NR	2195	1855	340‡‡			84.5
Matsui; non-genetic 2005w15	3166	NR	3166	2900	266‡‡			91.6
McKinney 2005w16	422	183	183	182	1	0	239	43.1
Schwartz 2005w19	2422	2164	1817	1256	563	346	258	51.9
Tate 2006w20	18 505	18 505	17 221	17 195	26	1284	0	92.9
Tu 2004; phase Iw1	4825	2078	2078	1684	394	0	2207§§	39.3
Tu 2004; phase IIw1	2823	1761	1761	1428	333	0	1062§§	50.6
Woolf 2000w21	1229	1106	1021	743	278	85	123	36.3
Yawn 1998w23	15 997	15 789	15 069	14 493	576	720	208	90.6
Young 2001w24	39 883	39 883	20 864	19 700	1164	19 019	0	49.3

NR-not reported.

*Includes two transgendered people for whom consent information was not available.

†Authors reported 1609 eligible; we adjusted this number to 1383 after excluding 226 from the original cohort who were dead at the time of the follow-up study and not eligible for inclusion.

‡Number eligible reported in Harris et al.¹³

§Reasons for not being approached reported in Harris et al.¹³

¶802 of 15 413 eligible people did not complete all parts of demographic survey and were not included in demographic analyses.

**Includes 593 people who consented to access of data from medical records but did not complete all parts of demographic survey.

††Per authors, non-respondents were considered as positive consent per Minnesota law. Table includes those who actively consented.

‡‡Aggregate data reported.

§§Not approached because of language barrier, surrogate decision maker unavailable and other, and patients died or left hospital.