The Population-Based Hungarian Twin Registry: An Update

Area of Science:

• Human genetics
• Population science
• Biomedical research

Background:

• The Hungarian Twin Registry (HTR) previously operated as a volunteer-based registry from 2006 to 2021.
• It included a diverse cohort of twins, triplets, and quadruplets across all age groups.
• The registry aimed to support twin studies and genetic research.

Purpose of the Study:

• To transition the Hungarian Twin Registry (HTR) from a volunteer-based to a population-based registry.
• To establish a comprehensive biobank and data resource for genetic research in Central Eastern Europe.
• To facilitate the registration of twins and their relatives through enhanced infrastructure and online platforms.

Main Methods:

• The HTR was re-established at Semmelweis University with support for IT, communication infrastructure, and a new website.
• A population-based approach involved contacting 157,751 individuals identified as likely twin-siblings via mail.
• Individuals registered through an online questionnaire collecting socio-demographic, anthropometric, and medical data.

Main Results:

• As of November 20, 2022, 12,001 individuals had registered, including adult twins, minor twins, and parents/guardians.
• Self-reported data indicated approximately 37.6% of registered adults and 22.3% of registered children were monozygotic (MZ) twins.
• The registry comprises 59.9% females and represents the largest population-based twin registry in Central Eastern Europe.

Conclusions:

• The transformation of the HTR into a population-based registry provides a unique and extensive resource.
• This expanded registry is poised to significantly advance modern genetic research in the region and globally.
• The comprehensive data collected will enable large-scale studies on genetic and environmental influences.