The Australian Twin Registry (ATR) has, since the late 1970s, enrolled more than 30,000 pairs of all zygosity types and ages willing to consider participation in approved research studies. Its core functions are the recruitment to, and maintenance of, an up-to-date database containing contact details and baseline information, and the management of fair and equitable access so as to enhance medical and scientific research. The ATR has facilitated more than 430 studies producing 525 peer-reviewed publications using a variety of designs including classic biometrical twin and twin family studies, co-twin control studies, intervention studies, longitudinal studies, and studies of issues relevant specifically to twins. The ATR is supported for 2004 to 2009 by an Australian National Health and Medical Research Council (NHMRC) Enabling Grant, a new form of funding which recognizes the importance of long-term support for shared national resources. New initiatives include: integration with the Western Australian Twin Child Health (WATCH) cohort and the new Western Australian Twin Registry (WATR); foundation of a cohort of mothers and their twin children recruited from the time of diagnosis of the multiple gestation (match); a national Twins Festival run in collaboration with the Australian Multiple Birth Association (AMBA); promotion of the ATR at medical conferences; and fostering an active network of researchers from a range of disciplines and providing financial support for new researchers to attend international twin research workshops. Consistent with its mission statement, the long-term goal of the ATR is to make twin studies a standard component of medical and scientific research.

The Western Australian Twin Register (WATR) was established in 1997 to study the health of all child multiples born in Western Australia (WA). The Register has until recently consisted of all multiples born in WA between 1980 and 1997. Using unique record linkage capacities available through the WA data linkage system, we have subsequently been able to identify all multiple births born in WA since 1974. New affiliations with the Australian Twin Registry and the WA Institute for Medical Research are further enabled by the use of the WA Genetic Epidemiology Resource — a high-end bioinformatics infrastructure that allows efficient management of health datasets and facilitates collaborative research capabilities. In addition to this infrastructure, funding provided by these institutions has allowed the extension of the WATR to include a greater number of WA multiples, including those born between 1974 and 1979, and from 1998 onwards. These resources are in the process of being enabled for national and international access.

This article describes the Australian Twin Attention-deficit/hyperactivity disorder (ADHD) Project (ATAP), the results of research conducted using this database and plans for future studies. Information has been actively collected from Australian families with twin children since 1991 for the ATAP database. The value of assessing siblings as well as twins is emphasized. Much work has gone into continuing the involvement of families in the study though this does become more difficult when twins reach maturity. The main focus of the project is ADHD in children and adolescents plus comorbid conditions including conduct disorder, oppositional defiant disorder, and generalized anxiety disorder. A major challenge has been how to retain continuity in the assessments, while at the same time covering changes in psychiatric classification, such as the move to Diagnostic and Statistical Manual of Mental Disorders (4th ed.; DSM-IV; American Psychiatric Association, 1994). Changes in the scale can affect the reports of twin similarity. Over the years, these twins have become part of other twin studies and future plans include linking different twin databases to investigate the relationships between childhood behavior and adult conditions. Recruitment, assessment and retention of twin families require a major commitment but create a significant resource for collaboration in areas outside the original aim.

Our studies of the teeth and faces of Australian twins commenced at the School of Dentistry, The University of Adelaide in the early 1980s. There are now over 900 pairs of twins enrolled in our continuing investigations, together with 1200 relatives. There are 3 main cohorts of participants. The first cohort comprises around 300 pairs of teenage twins for whom various records have been collected, including dental casts, facial photographs, finger and palm prints and information on laterality, including handedness. The second cohort comprises around 300 pairs of twins who have been examined at 3 stages of dental development from approximately 4 years of age to about 14 years: at primary, mixed, and permanent dentition (excluding 3rd molars) stages. The most recent study of tooth emergence and oral health, for which we are currently recruiting twins, will provide a third cohort of around 500 twin pairs aged from around birth to 3 to 4 years of age. Our broad aim in these studies has been to improve our understanding of how genetic and environmental factors contribute to variation in dental and facial features, and to oral health. We have also used our data to investigate aspects of the determination of laterality, particularly the fascinating phenomenon of mirror imaging. We plan to maximize the use of the longitudinal data and DNA we have collected, and continue to collect, by performing genome-wide scans for putative genetic linkage peaks for a range of dental features, and then to test for association between a series of likely candidate genes and our phenotypes.

The East Flanders Prospective Twin Survey (EFPTS) is a prospective, population-based registry of multiple births in the province of East Flanders, Belgium. EFPTS has several unique features: it is population based and prospective, with the possibility of long-term follow-up; the twins (and higher order multiple births) are ascertained at birth; basic perinatal data recorded; chorion type and zygosity established; and since 1969 placental biopsies have been taken and frozen at −20 °C for later determination of genetic markers. The EFPTS is the only large register that includes placental data and allows differentiation of 3 subtypes of monozygotic (MZ) twins based on the time of the initial zygotic division: the dichorionic–diamnionic pairs (early, before the 4th day after fertilization), the monochorionic–diamnionic pairs (intermediate, between the 4th and the 7th day post fertilization), and the monochorionic–monoamnionic pairs (late, after the 8-day post fertilization). This added a new dimension to didymology (the science of twins; didymos is the Greek word for twin): the timing of MZ twinning. Studies can be initiated taking into account primary biases, those originating in utero. Such studies could throw new light on the controversy over the validity of the classic twin method, the consequences of early embryological events (before and just after implantation of the embryo), the origin of congenital malformations, the sex proportion of multiples, the gene–environment interactions as far as intrauterine environment is concerned, to name but a few.

The University of British Columbia (UBC) Twin Project is a registry of approximately 1500 pairs of reared-together twins recruited from Vancouver, British Columbia and surrounding municipalities. The focus of the project is to examine personality and its disorders from a behavioral genetic perspective. The primary measures include self-report measures of variables from the major models of personality and personality disorders. Subsamples of the study have also been surveyed on a wide range of psychiatric conditions and symptoms, including, for example, substance use, mood, anxiety, coping, posttraumatic stress disorder, schizotypy, and several measures of the environment and experience. Also surveyed are general health and basic psychological processes including cognitive ability. This broad assessment has enabled us to examine not only the structure of personality, but also its potential role in psychopathology and other psychological processes. A feature of the project is that the measures selected reflect current thinking in the field as opposed to traditional psychiatric diagnostic criteria. The UBC Twin Project has been used in a number of collaborative projects on personality and psychopathology with other worldwide twin registries. At the present time, no DNA has been collected; however the facility to collect these data is available. Collaborative projects on this and future questionnaire studies are welcome.

We describe subject recruitment from the University of Chile School-Age Children Twin Registry (REMEUCHI). The research aim of REMEUCHI is to quantify the impact of genetic and environmental factors on scholastic achievement in a multicausal approach. The Ministry of Education of Chile, in collaboration with the Registry Office, provided the list of possible twin pairs graduated from high school in 2004 in Chile's metropolitan region. From a population of 70,065 school-age children who had graduated from high school, 434 possible twin pairs were analyzed. Of these, 327 were twins reared together (75.3% of the 434 possible twins pairs) and born between 1986 and 1987 in Chile (mean age 18 years), and approximately 8% were not twins despite matches on full name and birth data. The rest of the possible twin pairs were probably twins reared apart, since one member of the pair had moved to study in another region of Chile. Zygosity was determined through questionnaires, maternal reports of twin similarities, and by the hospital records of the twins at the time of birth. Three hundred and twenty-seven pairs were identified, where monozygotic (MZ) and dizygotic (DZ) twins represented 46.8% and 53.2% of pairs, respectively, with a DZ/MZ ratio of 1.14. Considering same-sex MZ pairs, the percentage of female pairs was greater (55.6%) than male pairs (44.4%). When DZ pairs were analyzed, 47.7% were of opposite sex, 20.1% were male pairs and 32.2% female pairs. In Chile, these findings represent a baseline study to contribute to the establishment of a national twin registry in the future.

The Chinese National Twin Registry is the first and largest population-based twin registry in China. It was established in 2001. The primary goal of this program is the establishment of a population-based twin registry of 45,000 twin pairs from several regions representing north, south, urban, and rural areas in China. A secondary goal is to study genetic contributions to complex diseases, and to test associations of candidate genes with related phenotypes. Seven thousand, four hundred and twenty-three twin pairs have been enrolled in the registry, in which 1613 pairs have undergone detailed questionnaire assessments and physical examination. Based on the baseline registry, a twin cohort was established. Continued research includes studies on intermediate phenotypes of cardiovascular and cerebrovascular diseases and psychological studies in adult twins, studies on growth and development in adolescent twins, and so forth. The current state and future plans for the Chinese National Twin Registry will be discussed in this article.

The Guangzhou Twin Registry, initiated in 2005, is a population-based registry of twins born between 1987 and 2000. To date, over 9700 pairs of twins, regardless of their health and medical history, were enrolled in the database using the Official Household Registry of Guangzhou City. The twins were subsequently verified by door-to-door visits based on the registry address. The primary goal of this registry is to develop a resource for genetic epidemiological studies on common diseases in the southern Chinese population. The initial focus is to distinguish the genetic and environmental determinants of eye diseases, in particular myopia and glaucoma. About 1000 pairs of twins living close to the Zhongshan Ophthalmic Center were invited for the first phenotyping examination, questionnaire administration and DNA collection in July and August 2006. An annual eye examination and other phenotype data collection have been scheduled for up to 5 years in order to investigate changes in phenotypes including the myopia progression, physical development and the changes of other eye-related phenotypes. Recruitment of adult twins aged 50 years and over is underway in the same city with the assistance of the government.

With the changing patterns of morbidity and mortality in China, noncommunicable chronic diseases have become the major threats to the health of the Chinese population. The causes of chronic diseases include genetic factors and behavioral risk factors such as the use of tobacco, alcohol, and other drugs, unhealthy dietary behaviors, and lack of physical activity. Twin studies offer a unique opportunity to disentangle the genetic and environmental risk and protective factors for chronic disease. The Qingdao Twin Registry (QTR) was initiated in 1998 as part of the National Chinese Twin Registry. Over 11,000 pairs of twins and multiples of all ages have been recruited into the registry. Several studies of physical and mental health are underway. Many of the adult twins have completed health and behavioral risk factor surveys, and the adolescent twins are participating in a study of gene–environment interactions in tobacco and alcohol use. Studies of the heritability of personality factors have been conducted. In 2002, Qingdao established the Qingdao Twin Health Promotion Association, a nonprofit organization that supports health services for twins and their parents, organizes special events and health-related activities for twins, and raises funds to conduct twin health examinations. The QTR will be a useful resource for future studies of population genetics in human health and disease.

The Danish Twin Registry is the oldest national twin register in the world, initiated in 1954, and, by the end of 2005, contained more than 75,000 twin pairs born in the between 1870 and 2004. The Danish Twin Registry is used as a source for studies on the genetic influence on normal variation in clinical parameters associated with the metabolic syndrome and cardiovascular diseases, clinical studies of specific diseases, and aging and age-related health problems. The combination of survey data, clinical data and linkage to national health-related registers enables follow-up studies of both the general twin population and twins from clinical studies. This paper summarizes the newest extension of the register and gives examples of new developments and phenotypes studied.

In studies on the Finnish Twin Cohorts, genetic and environmental determinants of common, complex diseases, and their behavioral risk factors have been investigated in Finland. In 1974, the older twins were identified, with a total of 13,888 like-sexed pairs of known zygosity. They have participated since 1975 in mail surveys, clinical examinations for subsamples, have been used to recruit families, and have been followed up for morbidity using national medical registers. Opposite twin pairs were added later. Two longitudinal studies of adolescent twins and their families, known as the FinnTwin12 and FinnTwin16 studies, have focused on determinants of health-related behaviors and disease in adolescents and young adults. This article describes current, ongoing data collection and analyses.

The Berlin Twin Registry began as a short-term local project and developed into a resource that now serves partners throughout Germany and Europe. A twin registry as a private company is a different approach with pros and cons. Compared to academic institutions, there are greater flexibilities in collaborations, as well as acquisition and use of research funds. Recruitment is based on invitation in the context of the mass media coverage of scientific results. Phenotyping in normal twin subjects is concentrated on intermediate phenotypes that can bear on common diseases. These phenotypes include proteomic approaches and gene expression. Some results are briefly described to give an impression of the range of research topics and related opportunities for retrospective and prospective collaborative research.

The Jena Twin Registry focuses on identifying twins in eastern Germany. It is based in part on registers of multiple births and data from registration offices, and in part on a volunteer sample approached by media calls and twin clubs. The Jena Twin Study of Social Attitudes (JeTSSA) is the first study based on the Jena Twin Registry. In a sample of 226 monozygotic and 168 dizygotic adult twin pairs, self- and independent reports of significant others (peers, spouses, parents) are collected to estimate genetic and environmental effects on social attitudes and the covariation of genetic influences on personality traits and social attitudes. In addition, the effects of measured environmental variables on attitude formation are examined.

After briefly recapitulating two earlier German twin studies (BiLSAT and GOSAT), we present two new German twin studies with a longitudinal perspective: CoSMoS and TwinPaW. The twin study on Cognitive ability, Self-reported Motivation and School performance (CoSMoS) aims to investigate predictors and influences of school performance in a genetically sensitive design, beginning with children in late elementary school. The Twin study on Personality And Wellbeing (TwinPaW) focuses on adult personality and its relation to physical health as well as health-related behavior in an adult sample of twins. Both studies are characterized by an effort to recruit new large twin samples through a novel recruitment procedure aimed at reducing self-selective sampling. In two German federal states, contact information on persons born on the same day and with the same name was retrieved from record sections. From the resulting pool of more than 36,000 addresses we contacted approximately 2000 parents of twins aged 9 and 10 for CoSMoS, as well as 2000 adult twin pairs for TwinPaW by telephone and mail. Personal contact by telephone proved to be more efficient with agreement rates of 63% in the children sample and 65% in the adult sample. In this article we briefly describe the rationale and the study aims of CoSMoS and TwinPaW as well as the characteristics of the sample we have recruited so far.

The goals, prospects and methods of the Longitudinal Israeli Study of Twins (LIST) are described. This study is interested in children's prosocial development from phenotypic, genetic and environmental perspectives. It focuses on measuring prosociality with a multi-trait multi-method approach, and relating it to children's general cognitive and sociocognitive abilities, and to parenting in the family. Other variables of interest such as children's temperament and parental values are discussed, as are ideas for further research.

Since its start as a database of ‘possible twins’, the Italian Twin Register has developed remarkably in terms of twin approach and recruitment, data-management tools, the cohorts enrolled, and the breadth of information gathered, making the Italian Twin Register a valuable resource for genetic epidemiological research. The Italian Twin Register is a random population of twins at both the national level and within targeted geographical areas or birth cohorts. Further, the Register is linked with disease records and has recently implemented a web-based method for volunteer twin recruitment specifically designed to promote the Register and to disseminate information on genetic epidemiology. To date, approximately 9000 twins have joined the Italian Twin Register, the majority of whom (approximately 70%) represent young adults aged 20 at time of enrolment. Although the total number of twins recruited to date is far below the expected figure initially predicted, the newly established standardized procedures guarantee an increase of around 2000 twins each year. Following the collaboration between the Italian Twin Register and the main Italian nonprofit association for blood donors, twin DNA sampling and storage has recently accelerated contributing to the large amount of phenotypic data collected. The Italian Twin Register is currently involved in both population and clinical based studies on various complex pheno-types and diseases, some conducted within large European consortia.

More than 100 pairs of adult twins, reared apart and growing old separately, have participated in the Japanese Study of Adult Twins Reared Apart and Growing Old Separately since it began in 1974. The subjects are 161 pairs of adult twins born between 1910 and 1945 in Japan. The main focus of this study is to investigate the influences of environmental factors and life history on life satisfaction and psychological well-being in later adulthood. A mail survey has been conducted on these twins each year since 1974. To date, the Wechsler Adult Intelligent Scale, Maudsley Personality Inventory, Newgarten Life Satisfaction Index, comprehensive medical examinations and personal interviews have been conducted for 12 twin pairs residing in various areas of Japan.

The Osaka University Aged Twin Registry (OUATR) is the largest adult twin registry in Japan. Since its establishment in 1974, the OUATR has conducted a number of studies with particular focus on the environmental contribution to physical–cognitive–mental aging, longevity and aging-dependent diseases in later adulthood. The registry consists of 12,000 pairs of Japanese twins born between 1900 and 1935. Two hundred and fifty pairs of twins have undergone comprehensive medical examination to date. Follow-up questionnaires have been mailed out on a regular basis, for the purpose of checking current vital statuses, health conditions, and so forth. The main objective of this longitudinal twin study is to contribute to the prevention of lifestyle-related diseases and the promotion of successful aging.