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The Population-Based Hungarian Twin Registry: Current Register Data, Researches and Linkages
David Laszlo Tarnoki1,2,3, Marton Piroska1,3, Dora Melicher3,4
1Medical Imaging Centre, https://ror.org/01g9ty582Semmelweis University, Hungary.
The Hungarian Twin Registry (HTR) is a large, population-based registry for twins and their families. It facilitates genetic and health research through extensive data collection and potential linkage with national health databases.
Area of Science:
- * Population Health
- * Genetics
- * Epidemiology
Background:
- * Established at Semmelweis University, the Hungarian Twin Registry (HTR) has operated as a population-based registry since 2021.
- * Significant infrastructure expansion includes blood storage, IT systems, and administrative resources.
- * The HTR is now the largest population-based twin registry in Central and Eastern Europe.
Purpose of the Study:
- * To describe the establishment, infrastructure, and operational procedures of the Hungarian Twin Registry.
- * To report the initial registration numbers and demographic characteristics of participants.
- * To highlight the registry's potential for future health research, including data linkage.
Main Methods:
- * Population-based recruitment of adult twins and relatives of minor twins via website and voicemail.
- * Nationwide identification and notification process.
- * Registration via a comprehensive questionnaire covering sociodemographics, anthropometrics, lifestyle, and medical history.
Main Results:
- * By December 20, 2025, 12,676 individuals (7244 adult twins, 5432 parents/guardians) had registered.
- * Among registered adult twins, 44.1% were monozygotic (MZ) and 55.9% dizygotic (DZ); 68.4% were female.
- * Among registered children, 23.5% were MZ and 76.5% DZ.
Conclusions:
- * The Hungarian Twin Registry is a substantial resource for population-based research.
- * The registry's infrastructure supports diverse data collection and future linkage with national health databases.
- * Potential for long-term follow-up and disease-specific analyses, particularly in collaboration with registries like the Hungarian National Cancer Registry.
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