© Kamla-Raj 2015 Int J Hum Genet, 15(2): 61-72 (2015) Knowledge, Awareness and Participation of Medical and Non-medical Students in the Malaysia National Thalassemia Prevention Programme Vasudeva Murthy C.R. 1 , Muhammad Zarif Asraf Bin Zulkeflle 2 , Sunil Pazhayanur Venkateswaran 3 and Ankur Barua 4 1,3 Department of Pathology, 4 Department of Community Medicine, International Medical University, Kuala Lumpur, Malaysia 2 Biomedical Science Graduate, Management and Science University, Shah Alam, Malaysia KEYWORDS Screening. Attitudes. Thalassemia. Multi-racial Population ABSTRACT There are about 1 in 20 Malaysians who are carriers of the thalassemia gene and the prevalence of this disease in Malaysia is 6-10 percent. This study was conducted to assess knowledge, awareness and participation of medical and non-medical students in the Malaysia National Thalassemia Prevention Programme. The design of the study was a cross-sectional study. A total of 300 questionnaires were distributed to selected students from the university. The collected data was analysed using SPSS version 20.0. Data analysis revealed a highly significant difference in total knowledge between medical students and non-medical students and the thalassemia awareness also showed significant statistical association between medical and non-medical students. In conclusion, medical students have better knowledge, awareness and screening rate of thalassemia. Address for correspondence: Dr. Vasudeva Murthy C.R. Department of Pathology, International Medical University, Kuala Lumpur, Malaysia Telephone: 03-2727 7430 Fax: +603-8656 7229 / 8656 8018 E-mail: drvasu2001@gmail.com INTRODUCTION Thalassemia is one of the most common ge- netic blood disorders in the world. There are approximately 240 million people worldwide who are heterozygous for β-thalassemia and approx- imately 200,000 affected homozygotes are born annually (Haque et al. 2015). It is a genetic disor- der which involves the absence of or errors in genes that affect the body’s ability to produce a protein in the red blood cells called haemoglo- bin, a protein present in the red blood cells. Gen- erally, these groups of single gene disorders have an estimated 5 percent prevalence as carriers. Like in many other countries, thalassemia also poses an important public health problem in Malaysia. Approximately 4.5 of Malaysians are carriers of ß-thalassemia, and annually the af- fected births are estimated at 2.1 per 1,000 with an estimated 5,600 patients with transfusion de- pendent ß-thalassemia in Malaysia (George and Tan 2010). The Malaysian Chinese possess the Southeast Asian deletion that causes Bart’s hy- dropsfetalis, a fatal condition in α-thalassemia (Fucharoen and Vip 2009). Lifelong treatment is needed for those affected with symptomatic thalassemia major and intermedia. Population screening for detection of carriers is the best way to reduce its occurrence and is being prac- ticed in many countries. The best mechanism for screening varies as it covers various areas such as the genetic examination and analysis as well as genetic counselling. In several countries, carrier screening pro- grams are being conducted using various ap- proaches. They include cascade screening, screening of ‘high-risk’ communities, screening of the general population and antenatal screen- ing. The percentage of β-thalassemia carriers identified using a cascade screening approach is 5-6 times higher. It has been shown earlier that in communities where consanguinity is common, one can identify even more number of carriers. More than 90 percent of the “at risk” couples were identified in Sardinia using cascade screen- ing by examining only 11percent of the popula- tion (Sazlina et al. 2015).Thalassemia carrier screening programmes can be divided into large- ly mandatory programmes and voluntary pro-