The following describes the procedures to be followed for use of human data available from the NBDC Human Database.
Open Data (marked as "Open" under the column with the heading "Type of Data" in the list of available research data)
1. Carefully read the NBDC Guidelines for Human Data Sharing.
2. Read the description of the study of interest (the description can be accessed by clicking on the corresponding research ID in the List of All Researchs) and download the data.
Controlled-Access Data (marked as "Controlled-Access" under the column with the heading "Type of Data" in the list of available research data)
The procedure to apply for data use is as follows
1. Carefully read the NBDC Guidelines for Human Data Sharing
2. Read the description of the study of interest (the description can be accessed by clicking on the corresponding research ID the List of All Researches) and note the data set ID of the desired data set. You will need the data set ID when applying for data use.
3. Collect the following information and documents that are required in the application for data use.
- The names of the principal investigator (PI) and all research collaborators and information on their affiliation. *Up to 30 research collaborators working at the same affiliated institution can be registered in one application.
- Information on publications related to the study for which the PI is applying for data use.
- The name, title, and e-mail address of the head of the PI’s affiliated institution. *The head of the institution refers to the person who endorses the institutional review board (IRB) approval or the decision that IRB is unnecessary.
- The research proposal (application form for IRB) for the study in which the data will be used (pdf, 5 MB or less).
- Notification from IRB approval (pdf, 5 MB or less)
4. Read and understand the NBDC Security Guidelines for Human Data (for Data Users) and download Form 5 (Checklist for the NBDC Security Guidelines for Human Data).Take necessary measures according to the level of access restriction (Type I or Type II) for the desired data set and complete Form 5 (xls/xlsx, 5 MB or less).
5. If there are any research collaborators, please download Form 7 (List of Research Collaborators) and enter the required information.
6. Fill required information in Form 2 (Application Form for Using NBDC Human Data) and email it with the research proposal (application form for IRB), notification of IRB’s approval, Checklist for the NBDC Security Guidelines for Human Data, and List of Research Collaborators (if applicable) to the NBDC Human Data Review Board Office (). Multiple data set IDs can be listed in one application form. The PI or an agent designated by the PI must handle the application.
7. The PI will be notified the decision of the review by e-mail (normally, within a couple of week after complete the information and documents needed for the review).
8. If the application is approved, data can be downloaded using the account and password provided in the notification e-mail.
# Note in advance that the approval for data use may be rescinded due to a request from the data providers or study participants.
# Information on the users of controlled-access data (the name of the PI, his/her affiliated institution, the data set ID, and the period of data use) will be showed on the web page of each study.
# If, due to incidental findings, you would like to utilize the currently used data for a separate study that is clearly different from the study approved for data use, you must submit a new application for data use.
# Transfer of data stored in the Sequence Read Archive (DRA) or the DDBJ’s Japanese Genotype-phenotype Archive (JRA) is done by downloading from the DRA or JGA websites. Details on the use of controlled-access data.