Data Access Procedures

Add Health

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 by visiting the CPC

Data Portal at data.cpc.unc.edu/projects/2/view or see the Add Health contracts page at

www.cpc.unc.edu/projects/addhealth/contracts. Add Health genotype data can be accessed via the

database of Genotypes and Phenotypes (dbGaP, www.ncbi.nlm.nih.gov/gap, accession number

phs001367.v1.p1).

Dunedin Multidisciplinary Health and Development Study

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/research-topics/dunedin.

ELSA

Polygenic indexes and genotype data are publicly available and are available here:

https://www.elsa-project.ac.uk/genetics. Phenotype and other publicly available data can be downloaded

from the UK Data Service: https://beta.ukdataservice.ac.uk/datacatalogue/studies/study?id=5050. Use is

limited to non-profit research use only. For more information regarding the data please contact

o.ajnakna@ucl.ac.uk.

 

E-Risk

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/research-topics/erisk.

EGCUT

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/en/biobank.ee/data-access) and submit it via e-mail to releases@ut.ee. The preliminary

request will be evaluated by the Estonian Committee on Bioethics and Human Research. Upon positive

review, researchers need to fill out a request form (also available at

genomics.ut.ee/en/biobank.ee/data-access) and submit it via e-mail to releases@ut.ee. The data will then

be shared pursuant to a Data Use Agreement. For further details, see

genomics.ut.ee/en/biobank.ee/data-access.

HRS

Polygenic scores are publicly available and can be downloaded here:

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

downloaded here: hrs.isr.umich.edu/data-products. Genotype data can be accessed via the database of

Genotypes and Phenotypes (dbGaP, www.ncbi.nlm.nih.gov/gap, accession number phs000428.v1.p1 and

phs000428.v2.p2) with the most recent version forthcoming via NIAGADS (www.niagads.org/). Use is

limited to non-profit research use only.

 

MCTFR

Access to the MCTFR PGIs is available by contacting Matt McGue (mcgue001@umn.edu), who will

provide access authorization. Access to MCTFR phenotypic data will require a research proposal the

structure of which can be provided by Matt McGue. Please note that the MCTFR is a complex,

longitudinal study with thousands of relevant phenotypes assessed at multiple points in time. An overview

of the range of phenotypes and developmental periods can be found in Wilson et al. (2019). Use of

phenotypic data requires an approved proposal that is approved by the MCTFR Principal Investigator

Committee; access to the MCTFR PGIs does not require an approved proposal. Because of the

complexities involved, developing a proposal typically involves multiple iterations with MCTFR staff and

are dealt with on a case-by-case basis.

 

STR

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/en/research/the-swedish-twin-registry.

TTP

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 security plan that ensures secure use of the data to minimize

deductive disclosure risks. To apply for restricted-use data, please visit

https://redcap.prc.utexas.edu/redcap/surveys/?s=FHJW9KCW8K.

 

UKB

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

the public interest. Researchers can register and apply for data access at

https://www.ukbiobank.ac.uk/register-apply/. Prior to publication of this paper, we will return the

Repository PGIs to the UKB in accordance with their “returning results” procedure:

https://biobank.ndph.ox.ac.uk/showcase/exinfo.cgi?src=returning_results. UKB will subsequently make

the PGIs available to researchers as “Derived data-fields.”

 

WLS

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, to access the

complete genotyped data, researchers will additionally need to receive IRB approval from their home

institution and enter into a Data Use Agreement between the researcher’s home institution and the

University of Wisconsin-Madison. For the most up-do-date instructions, see

www.ssc.wisc.edu/wlsresearch/documentation/GWAS/.

Check us out on Twitter: @thessgac

 

Acknowledgments

 

For financial support, the SSGAC thanks the U.S. National Science Foundation, the U.S. National Institutes of Health (National Institute on Aging, and the Office for Behavioral and Social Science Research), the Open Philanthropy Project, the Ragnar Söderberg Foundation, the Swedish Research Council, The Jan Wallander and Tom Hedelius Foundation, the European Research Council, and the Pershing Square Fund of the Foundations of Human Behavior.

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