Iranian school-aged twin registry: preliminary reports and project progress

BACKGROUND: National Persian school-aged twin registry was established to provide a platform for twin studies. In this report, we describe defining registry characteristics, database design, and preliminary results regarding gathered data in the first phase of the registry program. METHOD: Through focus group discussions, the required data elements to design the database and data collection process were defined. First, a list of twins in school-aged groups was retrieved from the electronic database of the Ministry of Education. Tehran schools were selected for the first phase of our registry. Standard “Pea-in-Pods” questionnaire and twins’ similarity questionnaires were filled out by the parents themselves in addition to demographic information. Data were analyzed using SPSS v.22. RESULTS: The first national school-aged twin registry was established in 2018. Firstly, the required data sets and data collection process were defined using focus group discussions. At the country level, the initial information on 189,738 students was retrieved from the national database of the Ministry of Education. They were born between 2003 and 2017, of which 94,997 are boys (50.1%) and 94,741 are girls (49.9%). Of them, a total of 5,642 pairs of school-aged twins participated in the first phase of our program. Our sample size comprised 9772 twins, 906 triples, and 92 quadruplets. The analysis of the zygosity questionnaire showed that 14% of twin pairs were identified as monozygotic twins. CONCLUSION: Recruiting school-aged twins through school health assistants leads to high enrollment and decreasing costs for the twin registry. The study showed a high rate of dizygotic twins that need to be verified by twin bio-sample in the next phase of studies. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12887-023-03865-x.