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
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:
https://hrsdata.isr.umich.edu/data-products/ssgac-polygenic-index-pgi-repository. 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/. We
have returned 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 has made the PGIs available to researchers as “Derived data-fields" (return 3586).
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/.