Affected Children Unaffected Minors Unaffected Adults Total % (N)
Total --- 28.7 (172) 19.3 (116) 53.0 (312) 100 (600)
Gender Female 39.0 (67) 52.6 (61 57.1 (178) 51.0 (306)
  Male 61.0 (105) 47.4 (55) 42.9 (134) 49.0 (294)
Age 0-2 26.7 (46) 15.5 (18) --- 10.7 (64)
  3-17 61.6 (106) 84.5 (98) --- 34.0 (204)
  18+ 11.6 (20) --- 100 (312) 55.3 (332)
Lineage Maternal --- 68.4 (13) 63.0 (46) 64.1 (59/92)
  Paternal --- 31.6 (6) 37.0 (27) 35.9 (33/92)
DNA 94.2 (162) 78.4 (91) 90.1 (281) 89.0 (534)
Refusal Cell lines 30.6 (26/85) 18.4 (9/49) 21.6 (40/185) 23.5 (75/319)
  Cardiac tissues 1.9 (3/156) 6.9 (4/58) 11.8 (20/176) 7.0 (27/384)
Recall Unanswered 15.5 (24) 28.0 (30) 16.5 (47) 18.5 (101/547)
  Answered 82.6 (131) 69.2 (77) 82.1 (238) 81.5 (446/547)
Table 1: Consent Form Type-grouping – Demographics of research participants and specific procedures
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