Unbiased estimation of lifetime survival requires patient identification at birth, with prospective follow-up thereafter. Reliable neonatal screening for sickle cell anemia has only been available since the early 1970's however (1;2), and newborn cohorts can currently only provide survival experience to early adulthood (3;4).

References

(1) Metters JS, Huntsman RG, Yawson GI. The use of the cord blood sample for the detection of sickle-cell anaemia in the newborn. J Obstet Gynaecol Br Commonw 1970; 77(10):935-938.

(2) Serjeant BE, Forbes M, Williams LL, Serjeant GR. Screening cord bloods for detection of sickle cell disease in Jamaica. Clin Chem 1974; 20(6):666-669.

(3) Serjeant GR, Serjeant BE. Management of sickle cell disease; lessons from the Jamaican Cohort Study. Blood Rev 1993; 7(3):137-145.

(4) Gill FM, Sleeper LA, Weiner SJ, Brown AK, Bellevue R, Grover R et al. Clinical events in the first decade in a cohort of infants with sickle cell disease. Cooperative Study of Sickle Cell Disease. Blood 1995; 86(2):776-783.