CATSS9w - The Child and Adolescent Twin Study in Sweden (9 year, web questionnaire)
Documentation files
Documentation files
Citation and access
Citation and access
Data access level:
Creator/Principal investigator(s):
Research principal:
Data contains personal data:
Yes
Type of personal data:
Pseudonymised, health data, social security number, lifestyle, exposures, names, addresses, survey responses
Code key exists:
Yes
Sensitive personal data:
Yes
Citation:
Method and outcome
Method and outcome
Unit of analysis:
Population:
9-year-old twins born in Sweden on or after 1st January, 2011
Time method:
Study design:
- Cohort study
- Observational study
Description of study design:
Data is collected through an online survey in which guardians participate and give their informed consent.
Sampling procedure:
Description of sampling:
All 9-year-old twins, both same-sex and opposite sex, born in Sweden on or after 2011, according to the Medical Birth Registry (the National Board of Health and Welfare) and living in Sweden at the time of study invitation. Twins who have have protected identity, have emigrated, or died are excluded. Only complete twin pairs are included in the study.
Time period(s) investigated:
Variables:
830
Number of individuals/objects:
8500
Response rate/participation rate:
49%
Description of the response rate/participation rate:
The total number of participating twins is 8,500 of 17,400, resulting in a response rate of 49%.
Samples/material - Collected from scientific collection/biobank
Samples/material - Collected from scientific collection/biobank
Name:
Type(s) of sample:
Data collection - Self-administered questionnaire
Data collection - Self-administered questionnaire
Mode of collection:
Self-administered questionnaire
Description of the mode of collection:
Web questionnaire
Time period(s) for data collection:
2020-03-01 - Ongoing
Data collector:
- Karolinska Institutet
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ROR
Source of the data:
- Registers/Records/Accounts: Medical/Clinical
- Registers/Records/Accounts
Instrument
Instrument
Name:
SDQ
Type:
Structured questionnaire
Description of the instrument:
Strengths and Difficulties Questionnaire (SDQ) is an assessment method used to measure the mental health of children and young people. The form is based on experiences from two other established and internationally widespread instruments ,the Rutter questionnaire and the Child Behavior Checklist (CBCL). DOI: 10.1111/j.1469-7610.1997.tb01545.x
Name:
A-TAC
Type:
Structured questionnaire
Description of the instrument:
Only the autism section of the A-TAC questionnaire, used in CATSS9 (see separate data description), is used here. DOI: 10.1192/bjp.187.3.262 DOI: 10.1186/1471-244X-10-1 DOI: 10.1186/1471-244X-13-233
Name:
ADHD
Type:
Structured questionnaire
Description of the instrument:
Screening of ADHD based on the DSM-IV Criteria. DOI: 10.1176/appi.books.9780890420249.dsm-iv-tr
Name:
LSC-R
Type:
Structured questionnaire
Description of the instrument:
The Life Stressor Checklist-Revised (LSC-R) is a self-report measure used to assess traumatic or stressful life events. DOI: 10.1017/S0033291711003060 DOI: 10.1037/t04534-000
Geographic coverage
Geographic coverage
Geographic location:
Geographic description:
Nationwide
Lowest geographic unit:
Parish
Highest geographic unit:
Country
Administrative information
Administrative information
Responsible department/unit:
Department of Medical Epidemiology and Biostatistics [C8]
Ethical Review
Ethical Review
Reviewer:
- Swedish Ethical Review Authority
components.catalogue.resource.content.administrativeInformation.ethicalReview.rorId.srText
ROR
Registration number:
2019-04181
Ethical review information:
Approved on 13th of August 2019
Reviewer:
- Swedish Ethical Review Authority
components.catalogue.resource.content.administrativeInformation.ethicalReview.rorId.srText
ROR
Registration number:
2020-00594
Ethical review information:
Approved on 4th of March 2020
Funding
Funding
Funding agency:
- Karolinska Institutet
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ROR
Funding information:
Government grants
Funding agency:
- Swedish Research Council
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ROR
Award number:
2017-00641_VR
Award title:
Swedish twin registry
Funding information:
The Swedish Twin Registry (STR) is a national research register open to academic and industrial users. The mission of the STR is to provide a longitudinal research resource for epidemiological and molecular studies of twins. It was originally established in 1959 with particular focus on cardiovascular disease and cancer. Since then, interest has expanded to almost all common diseases and health problems. The STR has contacted all living Swedish born twins (over 9 years) and is the world´s largest twin registry. The current system of twin ascertainment, which has been running in perpetual mode for 13 years, is done through parental interviews when the twins turn 9 years of age. Nationwide questionnaires and telephone interviews have been conducted for different birth cohorts since the beginning of the 1960s. Longitudinal information about health and disease is obtained through regular linkages to the Swedish health registries. DNA from 55 000 twins and serum of 13 000 twins are stored at KI Biobank and is subject to use to new investigations and analyses. Genome-wide genotyping of more than 30 000 participants has been completed and genotypes can be used for co-analysis for different outcomes and characteristics. We apply for funds to keep up the register, continue the ascertainment of 9-year old twins and introduce, in parallel, a nation-wide system for ascertainment of new-born twins with concomitant sampling of umbilical cord blood and immediate zygosity testing.
Funding agency:
- Swedish Research Council
Opens a new window at ror.org.
ROR
Award number:
2021-00180_VR
Award title:
The Swedish Twin Registry
Funding information:
We apply for a continuation of the support of the Swedish Twin Registry (STR), a research infrastructure for population based, epidemiological and molecular studies of twins. The purpose of the STR is to enable research about the importance of genetic and environmental factors for health, lifestyle and behavior.The STR facilitates access to data, samples and twin-contacts for de novo data-collection. For more than 60 years, it has been used for research on a large number of diseases, behaviors and health problems. All living Swedish born twins over the age of 9 years have been contacted by the STR and it is thereby the largest twin registry in the world.Nationwide questionnaires, measurements and telephone interviews have been conducted for different birth cohorts since the 1960s. Broad consents and a unified system make it possible to combine data and samples over the sub-studies to address new research questions. Beside self-reported health and exposures, additional critical information is obtained through regular linkages to the national health registers. At present, the STR holds DNA and other biological samples from more than 58 000 twins to be used for new analyses. Genome-wide genotyping is available for the vast majority.The STR is managed by Karolinska Institutet and led by a Steering Group with mandate for periods of 3 years. There is also an advisory National Council with members from several universities that meets two times per year. It provides an academic arena for input and communication regarding strategies impacting the research enabled by the STR in the future. The grant will support the running costs of the new twin contacts, sample and data collections, upholding the secure database and provide access to data for researchers. The national added value consists in the opportunity to manage and develop an already productive infrastructure in directions that benefits a national range of researchers in a cross disciplinary and transparent manner.
Topic and keywords
Topic and keywords
CESSDA topic classification:
Swedish Standard Classification of Research Subjects 2025:
Relations
Relations
Website:
Related resource:
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Publications
Citation:
Citation:
DOI:
Metadata
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