Twin Research and Human Genetics最新文献

{"title":"The German Twin Family Panel TwinLife: Current State and (Epi-)genetically Informative Satellite Projects.","authors":"Bastian Mönkediek, Christian Kandler, Mirko Ruks, Lena Weigel, Jana Instinske, Marco Deppe, Theresa Rohm, Christoph H Klatzka, Lena Paulus, Yixuan Liu, Ruyan Luo, Alicia M Schowe, Darina Czamara, Charlotte K L Dißelkamp, Leonard Frach, Andreas J Forstner, Frank M Spinath","doi":"10.1017/thg.2026.10064","DOIUrl":"10.1017/thg.2026.10064","url":null,"abstract":"<p><p>This report provides an overview of the current state of the German twin family panel TwinLife, including information on design and sample characteristics as well as a selection of assessed constructs. TwinLife is a register-based longitudinal panel of four birth cohorts of German-speaking monozygotic and dizygotic same-sex twin pairs, and their core family members, including parents and siblings, but also partners and children of twins, if available. Using address data provided by a representative set of residents' registration offices from across Germany, twin families were identified through a multistage process. The twins were born in 1990-1993, 1997-1998, 2003-2004, and 2009-2010. They were about 5, 11, 17, and 23 years old at the time of the first survey. Designed to investigate the development of social inequalities over the life course, the TwinLife currently covers an observation period from 2014 to 2025. In the first wave, the panel included data on 4096 twin families from all parts of Germany, covering the full range of key socioeconomic indicators. Over the years, the core TwinLife project has been expanded by several satellite projects, such as the molecular genetic TwinSNPs and the TwinLife Epigenetic Change Satellite (TECS) project. TwinLife provides a unique database with a wide-ranging potential for research, since it combines a longitudinal panel with an extended twin family design, adding genetic, epigenetic and additional biological data as well as the possibility to match geographical information.</p>","PeriodicalId":23446,"journal":{"name":"Twin Research and Human Genetics","volume":" ","pages":"242-257"},"PeriodicalIF":1.3,"publicationDate":"2026-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147975817","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Advancing Biobehavioral Research: An Overview and Update from the University of São Paulo Twin Panel.","authors":"Edgard Michel Crosato, Maria de Lourdes Brizot, John Fontenele Araujo, Fraulein Vidigal de Paula, Patricia Ferreira Monticelli, Briseida Dôgo de Resende, Mario Henrique Burlacchini de Carvalho, Mariana Azevedo Carvalho, Cintia Fridman, Fausto Medeiros Mendes, Mariana Minatel Braga, Paulo Henrique Braz da Silva, Herculano da Silva Martinho, Nancy Lee Segal, Rana Esseily, Tania Kiehl Lucci, Ricardo Prist, Claudio Possani, Claudia Monteiro Peixoto, Rosana Suemi Tokumaru, Isabella França Ferreira, Lilian Cristina Luchesi, Jennifer Leão Correia, Elisangela Dos Anjos Paula Vieira, Timon Lebaron-Khérif, Julia Gomes Freitas, Adriana Sicuto de Oliveira Ueno, Sarah Maria Barneze Costa, Thaís Gomes de Oliveira Machado, Laura Regina Antunes Pontes, Liana Isler Kupferman, Emma Otta","doi":"10.1017/thg.2025.10040","DOIUrl":"10.1017/thg.2025.10040","url":null,"abstract":"<p><p>The Painel USP de Gêmeos (University of São Paulo Twin Panel) is, based at the Instituto de Psicologia da Universidade de São Paulo. It was formally established in 2017 to advance research on fundamental psychological processes through twin study designs. Our relatively new registry comprises a volunteer sample of 8839 twin individuals, 70% of whom live in Brazil's Southeast, the region with the highest twinning birth rate (10.64‰) of the country, within a national population of 213 million. Our collaborative research group has expanded to include partners from psychology, dentistry, and medicine at USP, as well as other Brazilian institutions, such as the Universidade Federal do Rio Grande do Norte, Universidade Federal da Bahia, and Universidade Federal do Espírito Santo. We are advancing biobehavioral research in Brazil through innovative methodologies, interdisciplinary collaboration, and international partnerships. All twin participants contribute to multiple studies associated with four datasets employing the same hierarchical identification system for participants and families: the Biorepository, the Physiological and Physical Repository, the Behavioral Repository, and Fonoteca Cesar Ades (FOCA). Future directions include expanding our twin registry across the five regions of Brazil, our research partnerships, promoting genetic literacy, and fostering public engagement.</p>","PeriodicalId":23446,"journal":{"name":"Twin Research and Human Genetics","volume":" ","pages":"368-377"},"PeriodicalIF":1.3,"publicationDate":"2026-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146030796","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The African Twins and Multiple Births Research Foundation and the African Twin Registry: Advancing Record Linkage and Twin Research Infrastructure in Africa.","authors":"Malcolm Odion Eremionkhale, Veronika Odintsova, Dorret Boomsma, Morten Bjerregaard-Andersen","doi":"10.1017/thg.2026.10089","DOIUrl":"10.1017/thg.2026.10089","url":null,"abstract":"<p><p>Africa provides a distinctive context for twin research, with high rates of dizygotic twinning and remarkable population diversity. Yet, the region remains underrepresented in global twin and genetic association studies. Likewise, more data is also needed on overall twin health in the region, particularly in early life when neonatal and infant twin mortality has historically been very high. The African Twins and Multiple Births Research Foundation (ATMBRF), established in 2025 by Malcolm Odion Eremionkhale, addresses this gap through research coordination, advocacy, and infrastructure development. Central to its mission is the African Twin Registry (AfTR), a continent-wide initiative designed to identify and follow twins and higher order multiples via standardized protocols and record linkage methodologies. By integrating registry data with civil and health records, the AfTR will enable comprehensive cohort construction and longitudinal analyses across diverse settings. Its approach aims to combine community engagement, prospective and retrospective recruitment, and anticipated incorporation of genomic data. The AfTR's data will inform clinical guidelines, health system planning, and culturally grounded interventions addressing multiple births in Africa. This initiative will advance global twin and genetics research by incorporating genetically diverse populations and enhancing the evidence base for precision medicine.</p>","PeriodicalId":23446,"journal":{"name":"Twin Research and Human Genetics","volume":" ","pages":"385-389"},"PeriodicalIF":1.3,"publicationDate":"2026-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148563053","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Population-Level Data Linkages in Worldwide Twin Research Resources.","authors":"Veronika V Odintsova, Dmitry V Kuznetsov, Dorret I Boomsma","doi":"10.1017/thg.2026.10094","DOIUrl":"10.1017/thg.2026.10094","url":null,"abstract":"<p><p>Twin registries are foundational resources for research in behavioral and medical genetics, epidemiology, and public health. Over several decades, successive international reviews have documented their expansion in number, geographical coverage, phenotypic scope, molecular profiling, and participation in large-scale collaborations. This overview first traces this development through previous global overviews of twin registries and then examines record linkage as an increasingly important feature of contemporary twin research. Drawing on diverse twin registries, twin cohorts, multi-cohort resources, and international consortia, we describe how twin data are linked to population and administrative registers, health and educational records, biobanks, and environmental and geospatial data. Microdata linkage connects individual-level twin phenotypes with longitudinal administrative, clinical, educational, and molecular information, extending follow-up and supporting life-course analyses. Macrodata linkage incorporates contextual information on neighborhood environments, socioeconomic conditions, and policy settings, enabling individual and familial differences to be studied within broader social and environmental contexts. Comparison across resources demonstrates substantial variation in the scope and implementation of record linkage, from established national linkage systems to partial, domain-specific, and planned linkages, shaped by differences in legal frameworks, consent models, data governance, and secure access infrastructures. By placing current record linkage practices within the historical development of twin research resources, this overview shows how linkage extends the classical twin design through longitudinal, multi-domain, and contextual data, broadening its potential for research on health, behavior, and development across the life course.</p>","PeriodicalId":23446,"journal":{"name":"Twin Research and Human Genetics","volume":" ","pages":"205-212"},"PeriodicalIF":1.3,"publicationDate":"2026-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149081929","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"THG volume 29 issue 4 Cover.","authors":"","doi":"10.1017/thg.2026.10085","DOIUrl":"https://doi.org/10.1017/thg.2026.10085","url":null,"abstract":"","PeriodicalId":23446,"journal":{"name":"Twin Research and Human Genetics","volume":"29 4","pages":"f1"},"PeriodicalIF":1.3,"publicationDate":"2026-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149115186","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The Swedish Twin Registry, a Research Database, in the Era of New Swedish Legislation.","authors":"Ulrika Zagai, Paul Lichtenstein, Robert Karlsson, Nancy L Pedersen, Patrik Ke Magnusson","doi":"10.1017/thg.2026.10073","DOIUrl":"10.1017/thg.2026.10073","url":null,"abstract":"<p><p>The Swedish Twin Registry (STR), established in the late 1950s, is one of the world's most comprehensive twin registries and a cornerstone for research on genetic and environmental determinants of health. STR includes data on Swedish-born twins since 1886, complemented by longitudinal questionnaires, clinical measures, and biobank samples. In 2019, STR became a national research infrastructure with a mission to provide broader data sharing, while in 2025, STR further transitioned into a legally defined role as a 'certain research database' under the new Swedish Act on Certain Research Databases. The new legislation provides a framework for collecting and storing personal data with broad consent for future research projects, without requiring ethical approval for the data collection per se. Instead, ethical review is conducted separately for each research project seeking to use STR data. This article aims to describe STR's current role, governance, and legal context, highlighting implications for data access and biobank integration. The registry currently holds data on more than 160,000 twins, with ongoing ascertainment at 9 months and 9 years with follow-ups at ages 15, 18, and 24. Annual linkages to national health registers enrich longitudinal analyses of disease outcomes. A variable search engine is openly available via STR's web portal while higher level metadata is provided through Swedish research data services. STR's evolution illustrates both opportunities and challenges in balancing open science practices, legal compliance, and participant integrity within large-scale research infrastructures.</p>","PeriodicalId":23446,"journal":{"name":"Twin Research and Human Genetics","volume":" ","pages":"314-322"},"PeriodicalIF":1.3,"publicationDate":"2026-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148017675","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The Longitudinal Early Growth and Development Study: Opportunities for Integration Across Cohorts with Parent-Offspring or Sibling Data.","authors":"Leslie D Leve, Jenae M Neiderhiser, Jody M Ganiban","doi":"10.1017/thg.2026.10058","DOIUrl":"10.1017/thg.2026.10058","url":null,"abstract":"<p><p>The Early Growth and Development Study (EGDS) began in 2002 as a longitudinal prospective adoption study of birth parents, adoptive parents, and adopted children (<i>n</i> = 361 adoptees). It expanded in 2007 to include a second cohort of adoptees (<i>n</i> = 200), and a third cohort of siblings (siblings reared by the birth mother at age 7 [<i>n</i> = 217 siblings in 2013] and additional siblings in both birth and adoptive family homes [<i>n</i> = 881 siblings in 2016]). Data are available in a national repository within the Environmental influences on Child Health Outcomes (ECHO) study and have been integrated into analyses with national and international cohorts. Birth and adoptive families were originally enrolled through a systematic recruitment approach that began with efforts to partner with all domestic adoption agencies in specific regions of the United States following the birth of a child. Longitudinal assessments are ongoing and occurred in 9-month intervals until the adoptees turned 3 years of age, and in 1- to 2-year intervals thereafter to age 21. Data collection includes child temperament, cognition, behavior, and physical health; birth and adoptive parent personality, mental and physical health, context, parenting, and marital relations; the prenatal environment; genetic, hormonal, and cardiovascular data; and geocoding. A unique aspect of the adoption-sibling design is its ability to detect environmental influences on development and test complex interactions and correlations between genetic, prenatal, and postnatal environmental influences on a range of outcomes. The sample and procedures are described, followed by an overview of multicohort findings and opportunities for integration with other registries.</p>","PeriodicalId":23446,"journal":{"name":"Twin Research and Human Genetics","volume":" ","pages":"343-352"},"PeriodicalIF":1.3,"publicationDate":"2026-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13222755/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147943135","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Online Tool: 'Twin Registries Worldwide'.","authors":"Dmitry V Kuznetsov, Veronika V Odintsova","doi":"10.1017/thg.2026.10077","DOIUrl":"10.1017/thg.2026.10077","url":null,"abstract":"<p><p>To accompany the publication of the special issue, 'Population-Level Data Linkages in Worldwide Twin Registries', an online, interactive tool titled 'Twin Registries Worldwide' has been developed to provide an overview of twin registries across the globe. The tool currently offers a searchable table view that allows users to explore twin registries by country, registry name, recruitment period, sample size, phenotypic domains, availability of biological samples, and linkage to administrative or health-related databases.</p>","PeriodicalId":23446,"journal":{"name":"Twin Research and Human Genetics","volume":" ","pages":"213-214"},"PeriodicalIF":1.3,"publicationDate":"2026-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148472844","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The Italian Twin Registry Collaborations Involving Data And Tools Sharing, Cohorts' Harmonization, Data Integration, and Ethico-Legal Challenges.","authors":"Virgilia Toccaceli, Corrado Fagnani, Sonia Brescianini, Lorenza Nisticò, Cristina D'Ippolito, Miriam Salemi, Maurizio Ferri, Sabrina Alviti, Isabella Cascavilla, Debora Del Re, Letizia Leccese, Valentina Cardillo, Giorgia Bazzurri, Antonella Gigantesco, Gemma Calamandrei, Emanuela Medda","doi":"10.1017/thg.2026.10060","DOIUrl":"10.1017/thg.2026.10060","url":null,"abstract":"<p><p>Over the past years, the Italian Twin Registry (ITR) has joined networks and consortiums for genetic-epidemiological research, and several opportunities have arisen for national and international collaborations involving data and tool sharing, as well as cohorts' harmonization. These networking efforts have led ITR to face complex ethico-legal challenges within the framework provided by the General Data Protection Regulation (GDPR) since 2018 but have also represented the occasion to address critical aspects in ITR organization and activities, looking for long-term solutions. This article describes some examples of: ITR international collaborations implying data and tools sharing; ITR national collaborations aimed to replicate general-population findings; ITR integration with national and regional administrative records; ethico-legal criticalities experienced by ITR in multicohort collaborations, and initiatives to overcome the GDPR bottleneck. Regarding collected data, ITR currently contains information on 30,362 twins of different ages and geographical areas, of whom 7797 are being asked to reconfirm their enrollment, having turned 18 or over. In the coming period, these figures may increase rapidly, thanks to the ongoing access to the National Register of the Resident Population, for which ITR is working to solve privacy-related legal issues. This will enable a systematic enrolment of large and representative twin cohorts, making ITR a valuable tool for genetic-epidemiological research and for the monitoring of relevant health outcomes in the Italian population.</p>","PeriodicalId":23446,"journal":{"name":"Twin Research and Human Genetics","volume":" ","pages":"269-278"},"PeriodicalIF":1.3,"publicationDate":"2026-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148607835","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The East Flanders Prospective Twin Survey: The Methodology of a Population-Based Registry With Biobank.","authors":"Eline Meireson, Catherine Derom, Evert Thiery, Hilde Peeters, Esmée Bijnens, Bart Rutten, Tim Nawrot, Kristien Roelens, Steven Weyers","doi":"10.1017/thg.2026.10044","DOIUrl":"10.1017/thg.2026.10044","url":null,"abstract":"<p><p>The East Flanders Prospective Twin Survey, established in 1964, is one of the longest running twin birth registries with known placentation in the world. It operates across 13 maternity hospitals in East Flanders, Belgium, and has already registered 10,787 twin pairs and 318 triplet sets. Using a standardized protocol, EFPTS prospectively collects perinatal and biological data at birth, including detailed placental examination, systematic clinical documentation, and biobanking. Longitudinal follow-up and integration with national health and environmental databases enable linkage of early-life data to later-life phenotypes. Enrichment through nationwide datasets, such as the Study Centre for Perinatal Epidemiology, Child and Family health centers, environmental databases (based on land cover data and national monitoring stations), the Belgian National Register, and genomic reference data, further expands research opportunities. With over 60 years of experience, the EFPTS provides a uniquely rich and reliable framework for investigating the (epi)genetic and environmental determinants of health and disease.</p>","PeriodicalId":23446,"journal":{"name":"Twin Research and Human Genetics","volume":" ","pages":"229-234"},"PeriodicalIF":1.3,"publicationDate":"2026-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147677119","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}