Noguchi Memorial Institute for Medical Research (NMIMR) is committed to enhancing the value provided to stakeholders and improving the efficiency of information generation, synthesis, and dissemination. Additionally, NMIMR aims to contribute to global initiatives by making more information accessible to the public, enabling scientists and investigators to utilize this valuable resource.
To enhance data collection efficiency, NMIMR will continually upgrade its systems for data collection and collation. This will involve utilizing point of observation electronic data capture tools such as PDAs and tablets, ensuring automatic and rapid data transfer through synchronization with GSM and G3 networks, and implementing automated data checks and simple analytical routines. Different servers will be employed for various activities and projects across different geographical locations and branches, all of which will feed into a centralized secure data server. The centralization process will be facilitated by employing similar software, standard operating procedures (SOPs), and data structures institute-wide for similar work.
The data centralization initiative encompasses the collection of data in a central electronic bank (Central Servers) and the storage of this data in an electronic Archive. This centralization applies to all projects and activities conducted by NMIMR, both scientific and administrative in nature. Furthermore, data centralization is mandatory for all data collected under NMIMR contracts and institutional programs. Data generated from student projects funded or supported by NMIMR's research infrastructure will also be centralized.
Standard Metadata forms, providing information about the data, will be completed by data generators and made accessible to the Central Server Administrator. Progress reports for projects and activities, submitted biannually by project or activity leaders, will be compiled through a portfolio manager. An intranet progress report form will be developed and utilized, with the summary of these reports generated from the Central Server.
Uploading documents and data into the centralized database will require electronic sign-off from project or activity leaders. The Data Management Unit will facilitate the daily update of ongoing activities' data to the Central Server. Routine automated checks will be conducted at the central level by the Central Server Administrator, who will provide feedback to activity leaders for necessary database corrections and updates.
After completion of data collection and verification, a time limit will be set for database lock. For time-limited projects or activities, the database will be locked one year after the last data collection event or one year after the calendar year of data collection for continuous projects/activities (e.g., Sentinel Panel of Districts). Activity leaders will be notified of the database lock, and this information will be indicated in the intranet.
The databases in the Central Server will be accompanied by data dictionaries provided by activity leaders or their designated representatives. Additionally, a repository of electronic copies of investigator files, including protocols, informed consent form templates, data collection tools, approvals, sponsor agreements, material transfer agreements, etc., will be maintained. Any restrictions on future data use will be indicated in the metadata.
To promote data accessibility, multiple formats will be provided for unrestricted databases, while ensuring confidential information (e.g., names) is concealed. Unless there is a compelling justification, only commercial entities sponsoring NMIMR activities will be allowed to impose restrictions on public access to databases. NMIMR will strive to keep most of its databases unrestricted, especially those funded by commercial companies. NMIMR data management unit will provide additional information about the databases and address specific queries from the public.
A public access approval system for Central Server Databases will be implemented. All administrative databases will be permanently restricted. During data collection and for one year after database lock, project or activity-specific databases will be exclusively available to the respective investigators. These databases will only be advertised in the NMIMR intranet and labeled as restricted or unavailable. After the initial two years, access to the databases will be limited to the Analysis cluster, other NMIMR scientists, or project collaborating partners involved in consortia/multicenter studies or analytic projects that aim to build NMIMR's capacity. During this period, the databases will be advertised in the general public domain, labeled as restricted, and not available for download.
Three years after the database lock, the data sets will be advertised on the NMIMR website, indicating their availability for download. Approval from the Scientific Committee and NMIMR Institutional Review Board (IRB) will be required for download access, as indicated. In case of disputes, the final decision will rest with the NMIMR Director. The release of new data to the public will occur on an annual basis.
Visit the NMIMR website to download all SOPs related to data sharing and acquisition.
Data Management SOP/Policies Page: https://noguchi.ug.edu.gh/data-management-sops