Systems will be put in place to enable rapid, fair, and safe utilization of the
data collected by the present project (genome data, clinical information,
etc.) to promote drug discovery and research and development of
diagnostic technologies. During FY2022, the Project Implementation
Preparation Office will take the lead in formulating data utilization policy and
the rules on data sharing (data sharing policy), as well as examining the
establishment of a Data Utilization Review Committee, and will construct a
data sharing system (research support system) and commence operations
on a trial basis, with the aim of starting full data-sharing during FY2023.
The Analysis and Data Center will use the data sharing system based
on the data sharing rules, etc. drawn up by the Project Implementation
Preparation Office, and will conduct specific operations related to data
utilization.
o Data utilization policy and rules on data sharing (data sharing policy)
The Project Implementation Preparation Office will formulate the data
utilization policy and the rules on data sharing (data sharing policy) during
FY2022.
The data utilization policy will set out the basic concepts for data
utilization and items relating to the Data Utilization Review Committee, to
ensure fair, smooth use of data. The rules on data sharing (data sharing
policy) will set out necessary items regarding data sharing with the Industry
Consortium and the Academic Consortium to ensure prompt utilization of
the data that are collected.
The Analysis and Data Center will share data with the Industry
Consortium and the Academic Consortium in accordance with the data
sharing rules to promote utilization of the data in industry and academe. In
addition, the Analysis and Data Center will manage the starting point for the
data sets in both consortiums (the point at which about 100 cases of data
are registered, excluding rare cancers), and after the starting point is
reached, the center will manage the overview of data, applications for use,
granting access rights, the status of use, etc. by consortium members.
When members of either consortium need to apply to use the data, their
applications will be reviewed and approved by the Data Utilization Review
Committee, which will be set up within the Project Implementation
Organization.
In addition, the Analysis and Data Center will manage the restricted
period of the collected data (a period greater than 24 months from the
starting point but not exceeding 30 months), and will register data that have
passed the restricted period in a public database.
o Data sharing system (research support system)
On-premise and cloud data sharing systems will be created to ensure
seamless utilization of the accumulated data, and the Analysis and Data
Center will share data with users belonging to either of the consortiums via
these systems. Mechanisms will be examined to promote active utilization
of the data, such as displaying the clinicopathological significance of gene
mutations and introducing functions to support clinical studies at medical
institutions.

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