Table 3 Data access across the cohort studies.
From: A scoping review of adult NCD-relevant phenotypes measured in today’s large child cohort studies
Cohort | Data access details | Contact/Requests |
|---|---|---|
ABCD | ABCD is an Open Science study. Data are released annually. Access must be approved by the NDA Data Access Committee. | Complete the Data User Certificate for access. Visit [https://nda.nih.gov/study.html?id=2147]. |
BiB | Data can be accessed after request is approved and Data Sharing Contract and Data Sharing Agreement are signed. There is a fee for accessing data. | Submit EOI form via email [borninbradford@bthft.nhs.uk]. |
BIGCS | Data access will begin when >50,000 pregnant women have been recruited and their children reach at least 3 years old. Data use must obey relevant laws and regulations of People's Republic of China. All projects must be approved by the Committee of Ethics. Approved projects will be considered as sub-projects of BIGCS. | Submit an application to the Guangzhou Women and Children Medical Center via email [data.bigcs@bigcs.org]. |
CPCD | Data may be shared on reasonable request. | Contact the principal investigator Professor Peng Jia at [jiapengff@hotmail.com]. |
ELFE | Data can be accessed by any public or private sector research team providing it meets the conditions set out in the data access charter. Exclusive access given to research teams who helped to design ELFE for the first 18 months, after which access is extended to the whole scientific community. Members of research teams not affiliated with ELFE must have their project approved by the Committee for Access to Elfe Data and submit a commitment to comply with methodological guidelines to the French Data Protection Authority. | Requests for access can be made via Pandora, a secure internet platform. |
FIN-HIT | FIN-HIT welcomes collaborative research partners. | Requests can be sent to Principal Investigator Heli Viljakainen via email [heli.viljakainen@helsinki.fi] or phone [+358 50 4485660]. |
GenV | Currently developing data and biosample access frameworks. GenV’s data is intended to be equal access, via the FAIR and Five Safes principles, with limited periods of protected data access from the point at which a complete usable dataset is available. | Sign up for updates on data access via the website [https://www.genv.org.au/for-researchers/inquire-about-the-data/]. |
Hokkaido Birth Cohort | Data are not currently publicly available but can be made available upon request. | Email corresponding author–[rkishi@med.hokudai.ac.jp] is the corresponding author on the most recent (2021) cohort protocol. |
JECS | Data are not currently publicly available due to ethical restrictions and legal framework of Japan. | Inquiries about data access can be sent via email to [jecs-en@nies.go.jp]. The person responsible for handling enquiries sent to this e-mail address is Dr Shoji F. Nakayama, JECS Program Office, National Institute for Environmental Studies. |
Ko-Chens | Limited access to data stored on the KoCHENS Database System. | |
LifeLines | Researchers from public institutes can apply by submitting a proposal to the LifeLines Research Office. Proposals are reviewed by the LifeLines scientific board. There are costs associated with accessing data and biomaterials. | Submit proposal to the LifeLines Research Office [LLscience@umcg.nl]. |
PERSIAN Birth Cohort | Plan to develop a comprehensive data catalogue in the future with plans to participate in collaborations. Decisions on data sharing will be made by the cohort steering and scientific committees. | |
SCHEDULE-P | De-identified data can be shared for research purposes. Data are held and managed by the research group at Shanghai Children’s Medical Center. Access via application which is approved by the Publication Committee. | Contact Dr Fan Jiang [fanjiang@shsmu.edu.cn] and Dr Yunting Zhang [edwinazhang@hotmail.com] to discuss potential collaboration. |
TMM BirThree | Currently, Japanese research institutions have full access to data. Researchers in countries outside Japan can access phenotypic data and summary statistics. Currently discussing international access to genetic data. | |
Young-HUNT4 | Research groups with a principal investigator affiliated with a Norwegian research institution may apply for data access. Agreements are made between research institutions and the Faculty of Medicine, Norwegian University of Technology and Science, Trondheim. Applications must be approved by the Regional Committee for Medical and Health Research Ethics in Mid-Norway. | Applications can be sent to HUNT Research Center. Information on the HUNT website [http://www.ntnu.edu/hunt.Enquiries] or contact Professor Turid Lingaas Holmen, HUNT Research Center [turid.lingaas holmen@ntnu.no] or Kirsti Kvaløy at [kontakt@hunt.ntnu.no]. |
