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Newborn experience in the Cooperative Study of Sickle Cell Disease.

In 1978, the National Heart, Lung, and Blood Institute of the NIH initiated a large-scale, multiinstitutional collaborative study to investigate the clinical course of sickle cell disease from birth to death. Twenty-three institutions participate in the cooperative study, of which 19 have pediatric components. Newborn screening is performed in 18 institutions. Centers are located along the east coast, and in the South, the Midwest, and California. Both rural and urban populations are represented in the study. This Cooperative Study of Sickle Cell Disease has been described in detail.
 MATERIALS AND METHODS
 Newborn screening began in late 1978, and patient entry began in 1979. Between late 1978 and August 1986, 633 infants were found to have a hemoglobin pattern of FS and 326 were found to have FSC. A major effort was made to enroll these infants with sickle cell disease in the cooperative study. Other infants whose diseases were not diagnosed by screening but referred to the centers were also enrolled. From these two sources a total of 600 infants less than 6 months of age had been enrolled in the study as of August 1986. Diagnoses were established by cellulose acetate and citrate agar gel electrophoreses or by isoelectric focusing studies.
 The children have been followed up regularly at the study centers. Visits are scheduled for the ages of 2, 4, 6, 9, 12, 15, 18, 21, and 24 months and twice yearly thereafter. During the visits an interval history is obtained, a complete physical examination is performed, and developmental state is assessed.