Table 1

Demographics of DBAR participants

TotalSTs*LeukemiaMDSNo cancer or MDS
No. of cases 608 15 4 (includes 1 ST and 1 AML) 589 
Male-female ratio 306:302 5:10 2:0 3:1 298:291 
Birth years 1941-2009 1941-1987 1954, 1958 1952-2007 1941-2009 
Person-years 9458 501 90 116 ND 
Age at diagnosis of DBA 3 mo (birth-30 y) 3 mo (birth-29 y) 3 mo, unstated 8 mo (2 mo-1 y) 3 mo (birth-30 y) 
Age at event or last follow-up 18 (< 1-69) 41 (13-64) 44, 46 32 (2-50) 18 (< 1-69) 
No. who died 60 50 
Age at death 18 (1 mo-64 y) 33 (14-64) 45, 46 18, 46 18 (1 mo-64 y) 
No. who had BMT 62 60 
Age at BMT 8 (1-45)  45 8 (1-45) 
TotalSTs*LeukemiaMDSNo cancer or MDS
No. of cases 608 15 4 (includes 1 ST and 1 AML) 589 
Male-female ratio 306:302 5:10 2:0 3:1 298:291 
Birth years 1941-2009 1941-1987 1954, 1958 1952-2007 1941-2009 
Person-years 9458 501 90 116 ND 
Age at diagnosis of DBA 3 mo (birth-30 y) 3 mo (birth-29 y) 3 mo, unstated 8 mo (2 mo-1 y) 3 mo (birth-30 y) 
Age at event or last follow-up 18 (< 1-69) 41 (13-64) 44, 46 32 (2-50) 18 (< 1-69) 
No. who died 60 50 
Age at death 18 (1 mo-64 y) 33 (14-64) 45, 46 18, 46 18 (1 mo-64 y) 
No. who had BMT 62 60 
Age at BMT 8 (1-45)  45 8 (1-45) 

All ages are median (range) in years unless otherwise stated.

DBA indicates Diamond Blackfan anemia; DBAR, Diamond Blackfan Anemia Registry; ND, not done; and BMT, bone marrow (stem cell) transplantation.

*

STs in patients who had not received a BMT.

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