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RESULTS:Of the 119 participating mothers, 69 (58%) had children with sickle cell trait,22 (18.5%) with hemoglobin C trait, 18 (15.1%) with alpha thalassemia trait and,in 10 cases (8.4%), the result was inconclusive. At the hospital, 118 mothers(99.2%) received information about where to go to collect the test and 115 (96.6%)were informed about the correct time to collect the test. Download hdd regenerator 1.71 iso. Only 4 mothers (3.4%)were informed about which diseases are investigated and the risks of notperforming the screening. Seventeen mothers (14.3%) recognized the differencebetween trait and disease, and 42 (35.3%) considered that a positive screeningtest could have implications for future pregnancies. In 70 cases (58.8%), thechild's physician was not informed about the screening test results. MethodThis is a descriptive study, previously approved by the Ethics Committee on HumanResearch of UFSCar (number: 121,661) and carried out in the year 2013.

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Mothers ofchildren born in 2010 and 2011 that had an altered result at the screening test forhemoglobinopathies were invited to participate in the study. ResultsA total of 119 mothers whose children had an altered hemoglobin screening testparticipated in the study. None of the children participating in the study was sick, allwere heterozygous, i.e., they had an abnormal hemoglobin trait. Sixty-nine participants(58%) had children with sickle-cell trait (HbS); 22 (18.5%) with trace C (HbC); 18(15.1%) with alpha-thalassemia trait, identified by the presence of Hb Bart's; and in 10cases (8.4%) the result of the screening was inconclusive, i.e., it was not possible todefine the hemoglobinopathy pattern, suggesting a possible rare hemoglobin, specificallynon-identified by laboratory methods used in the testing (Electrophoresis by IsoelectricFocusing and High Resolution Liquid chromatography).shows the skin color distribution andsocioeconomic profile of this population.

Fathern (%)Mothern (%)Childn (%)EthnicityWhite37 (31.1%)39 (32.8%)59 (49.6%)Mixed-race62 (52.1%)54 (45.4%)50 (42.0%)Black20 (16.8%)26 (21.8%)10 (8.4%)Level of schoolingElementary School10 (8.4%)—Elementary I (1 st to 5 thGrades)19 (15.%)12 (10.1%)Elementary II (6 th to 9 thGrades)32 (26.9%)36 (30.3%)High School54 (45.4%)69 (57.9%)College/University4 (3.4%)2 (1.7%)Parents’ marital statusLiving together106 (89.1%)Not living together13 (10.9%)Family income per capitaUp to 1/2 minimum wage45 (37.8%)Between 1/2 and 1 minimum wage62 (52.1%)Between 1 and 2 minimum wages12 (10.1%). Information received by mothers in Primary Health Care related to theneonatal screening test.The data shown in refer to informationrelated to genetic counseling that the mothers received, such as information about thehereditary characteristic of hemoglobinopathies, recognizing the difference betweentrait and disease and the possible implications of the altered test for futurepregnancies. In eight cases (6.7%), the families had not returned to the Health CareUnit and were advised in relation to the presence of hemoglobinopathy in the familythrough this research. As for the other 110 cases (92.5%) the information was providedby the nurse, and in one case (0.8%) the information was provided by a doctor. Thefrequency of relatives tested was of 72 mothers (60.5%), 17 fathers (14.3%) and 31siblings (26.1%); the results of tests performed in these families were not availablefor consultation.

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