Data Sets

The Collaborative Study on the Genetics of Alcoholism (COGA) is a multi-site project whose goal is to identify specific genes involved in the predisposition to alcohol dependence and related disorders. The COGA sample consists of large families densely affected with alcohol dependence, who were identified through inpatient or outpatient alcohol treatment programs. All individuals were administered the Semi-Structured Assessment for the Genetics of Alcoholism (SSAGA) interview, a polydiagnostic instrument that assesses most major psychiatric disorders. Since 1991, COGA has interviewed more than 17,000 members of more than 2,200 families from across the United States, many of whom have been longitudinally assessed. COGA has used a variety of complementary strategies for gene identification, and has a variety of genotyped samples in which different types of genetic analyses are on-going. These include (1) family-based linkage sample; (2) case control GWAS sample; and (3) child-adolescent sample. Family members, including adults, children, and adolescents, have been carefully characterized across a variety of domains, including alcohol and other substance-related phenotypes, co-occurring disorders (e.g. depression), electrophysiology, key precursor behavioral phenotypes (e.g. conduct disorder), and environmental risk factors (e.g. stress). COGA participants have also provided a blood sample that has been used to create a repository of DNA and cell lines which are used for genetic studies.

 

Click here for information on how to access COGA data.

FinnTwin16 (FT16) and FinnTwin12 (FT12) are two population-based twin studies aimed at understanding how genetic and environmental influences impact the development of alcohol use and related behaviors across adolescence and into young adulthood. All twins were identified through Finland’s Central Population Registry, permitting exhaustive and unbiased ascertainment of all twins born in the country across 10 birth, for a total of ~10,000 twins and their families. FT16 has questionnaire assessments at ages 16, 17, 18.5, and in the mid-20s. These questionnaires contain items on alcohol use, smoking, other drug use, personality, and related health habits and environmental factors. A subset of the twins highly concordant or discordant for alcohol use in adolescence (~600 twins) also completed psychiatric interviews, DNA collection, electrophysiological measures, and neuropsychological testing at the mid-20s assessment. FT12 first assessed children at age 12, with follow-ups at age 14, 17, and in the young 20s. We are currently collecting data from this sample in early midlife. FT12 contains rich data from the twins, parents, teachers, and peers. A subset (~1850 twins and their parents) also completed psychiatric interviews at ages 14 and 22. GWAS data for this subset are also available.

 

To inquire about data access, email Danielle Dick at danielle.m.dick@rutgers.edu.

Avon Longitudinal Study of Parents and Children (ALSPAC) has followed a large epidemiological cohort of over 14,000 children (with DNA on 10,000), born from pregnancies with due dates between April 1991 and December 1992, and their families, for over 25 years. The project has collected comprehensive health-related information, including phenotypic outcomes, environmental factors, and DNA, with >85 assessments from mothers, their partners, and children, conducted from the pre-natal stage through age 17 at yearly, or more frequent, intervals.

Click here to learn more about the questionnaires, measures, and cohort sample.

Click here if you are interested in accessing the ALSPAC data set.

The ABCD Study is a prospective longitudinal study starting at the ages of 9-10 and following participants for 10 years. The study includes a diverse sample of nearly 12,000 youth enrolled at 21 research sites across the country. It measures brain development (via structural, task functional, and resting state functional imaging), social, emotional, and cognitive development, mental health, substance use and attitudes, gender identity and sexual health, biospecimens, as well as a variety of physical health, and environmental factors. In addition, various external databases have been linked with ABCD Study data providing information about local conditions for environment, poverty, pollution, school, and policy, as examples. These can be used for providing context when evaluating behavioral and brain development. For more information about the ABCD Study, please visit the ABCD Study website.

The National Longitudinal Study of Adolescent to Adult Health (Add Health) is a longitudinal study of a nationally representative sample of over 20,000 adolescents who were in grades 7-12 during the 1994-95 school year, and have been followed for five waves to date, most recently in 2016-18. Over the years, Add Health has collected rich demographic, social, familial, socioeconomic, behavioral, psychosocial, cognitive, and health survey data from participants and their parents; a vast array of contextual data from participants’ schools, neighborhoods, and geographies of residence; and in-home physical and biological data from participants, including genetic markers, blood-based assays, anthropometric measures, and medications.

To request access to Add Health, visit the CPC Data Portal

UK Biobank is a large-scale biomedical database and research resource, containing in-depth genetic and health information from half a million UK participants. Since 2006, UK Biobank has collected an unprecedented amount of biological and medical data on half a million people, aged between 40 and 69 years old and living in the UK, as part of a large-scale prospective study. With their consent they regularly provide blood, urine and saliva samples, as well as detailed information about their lifestyle which is then linked to their health-related records to provide a deeper understanding of how individuals experience diseases.

Apply for access here.