β-Thalassemia major births after National Screening Program in Taiwan

• Published in: Pediatric blood & cancer 2008-01, Vol.50 (1), p.58-61
• Main Authors: Chern, Jimmy P.S., Lin, Kai-Hsin, Lu, Meng-Yao, Lin, Dong-Tsamn, Jou, Shiann-Tarng, Yang, Yung-Li, Chang, Hsiu-Hao, Su, Syi, Lin, Kuo-Sin
• Format: Article
• Language: English
• Subjects: beta-Thalassemia - diagnosis; beta-Thalassemia - epidemiology; Continental Population Groups; Female; Genetic Counseling; Genetic Testing; health education; Humans; interracial marriage; Male; Prenatal Diagnosis; screening; Taiwan - epidemiology; β-thalassemia major
• ISSN: 1545-5009; 1545-5017
• DOI: 10.1002/pbc.21185

Objective A National Thalassemia Screening Program was adopted in Taiwan in 1993. This report examined that program's results and impact. Methods Patients with β‐thalassemia major born between 1994 and 2003 were recruited through the help of all thalassemia clinics in Taiwan. A structured questionnaire was designed to collect the reasons for affected births. Results There were 97 affected births from 1994 to 2003.These births resulted after informed choice (n = 4), screening problems (n = 83), and undetermined causes (n = 10). Approximately 83% (5/6) of affected births in 2003 came from interracial marriages. Conclusions This report has identified several areas that might improve the thalassemia‐screening program, including carrier screening in high school rather than in early pregnancy and the involvement of genetic counselors, providing care of new female immigrants. Pediatr Blood Cancer 2008;50:58–61. © 2007 Wiley‐Liss, Inc.