Data access procedures

Access to the polygenic indexes and full phenotype data in Add Health is publicly available via a restricted data use contract with the University of North Carolina at Chapel Hill.

Obtain access via the CPC Data Portal at data.cpc.unc.edu.

Add Health genotype data can be accessed via the database of Genotypes and Phenotypes (dbGaP) at ncbi.nlm.nih.gov/gap, accession number phs001367.v1.p1.

The datasets reported in the current article are available on request by qualified scientists. Requests require a concept paper describing the purpose of data access, ethical approval at the applicant’s university, and provision for secure data access. We offer secure access on the Duke, Otago, and King’s College campuses. All data analysis scripts and results files are available for review.

For more information, see moffittcaspi.trinity.duke.edu.

The datasets reported in the current article are available on request by qualified scientists. Requests require a concept paper describing the purpose of data access, ethical approval at the applicant’s university, and provision for secure data access. We offer secure access on the Duke and King’s College campuses. All data analysis scripts and results files are available for review.

For more information, see moffittcaspi.trinity.duke.edu.

Estonian Biobank data is available for academic research. To request phenotype, polygenic index, and/or genotype data, researchers need to fill out a preliminary request form available at genomics.ut.ee and submit it by email to releases@ut.ee. The preliminary request will be evaluated by the Estonian Committee on Bioethics and Human Research.

Upon positive review, researchers must complete a formal request form, also available at the same link, and submit it to releases@ut.ee. The data will then be shared pursuant to a Data Use Agreement.

Polygenic indexes and genotype data are publicly available at elsa-project.ac.uk/genetics.

Phenotype and other publicly available data can be downloaded from the UK Data Service at ukdataservice.ac.uk.

Use is limited to non-profit research use only. For more information regarding the data, please contact o.ajnakna@ucl.ac.uk.

Polygenic scores are publicly available and can be downloaded at hrsdata.isr.umich.edu.

Phenotype and other publicly available data can be downloaded at hrs.isr.umich.edu/data-products.

Genotype data can be accessed via dbGaP at ncbi.nlm.nih.gov/gap using accession numbers phs000428.v1.p1 and phs000428.v2.p2. The most recent version is available via NIAGADS.

Use is limited to non-profit research use only.

To request access to MCTFR polygenic indexes or phenotypic data, contact Matt McGue at mcgue001@umn.edu. Access to PGIs can be granted directly. Access to phenotypic data requires a research proposal, the structure of which can also be provided by Matt McGue.

Please note that the MCTFR is a complex, longitudinal study with thousands of phenotypes assessed across multiple developmental periods. An overview of the range of phenotypes and developmental stages can be found in Wilson et al. (2019).

Use of phenotypic data requires approval from the MCTFR Principal Investigator Committee. Due to the complexity of the data, proposal development typically involves multiple iterations with MCTFR staff and is handled case by case.

Researchers interested in using STR data must obtain approval from the Swedish Ethical Review Authority and from the Steering Committee of the Swedish Twin Registry. Researchers using STR data are required to follow the terms of a number of clauses designed to ensure protection of privacy and compliance with relevant laws.

For further information, please visit ki.se.

Access to the polygenic indexes and phenotype data from the Texas Twin Project is available via a restricted data use contract with the University of Texas at Austin. Restricted data users must develop an IRB-approved research proposal and a security plan that ensures secure use of the data to minimize deductive disclosure risks.

To apply for restricted-use data, please visit redcap.prc.utexas.edu.

All bona fide researchers can apply to use the UK Biobank resource for health-related research that is in the public interest.

Register and apply for access at ukbiobank.ac.uk/register-apply.

We have returned the Repository PGIs to UK Biobank in accordance with their returning results procedure. UK Biobank has made the PGIs available to researchers as derived data-fields (return 3586).

In addition to phenotype data, the polygenic index data is publicly available. As of February 2019, researchers who wish to use these polygenic indexes should email a brief research proposal and a copy or link to their CV to wls@ssc.wisc.edu.

Given the need to preserve participant confidentiality, access to the complete genotyped data also requires IRB approval from the researcher’s home institution and a Data Use Agreement between the home institution and the University of Wisconsin–Madison.

For the most up-to-date instructions, see ssc.wisc.edu.