The Data Services unit at the Johns Hopkins University Sheridan Libraries supports your success in finding, using, visualizing, managing, and sharing data. Through consultations and trainings, they help you:
Increasingly, funders and publishers require broad sharing of scientific data to increase the impact and accelerate the pace of scientific discovery. In addition, the White House Office of Science and Technology Policy released an August 2022 memo calling for public sharing of scientific publications and data across multiple agencies. Planning for data sharing at the design phase of a research project can make compliance with these requirements much easier. The checklist that follows, designed for JHU researchers, outlines the full planning process, the results of which can be integrated into a comprehensive Data Management and Sharing plan. The checklist is designed as guidance only and does not constitute formal policy. More detail is available through the Data Management Library Guide.
The DMPTool offers a robust and comprehensive solution for developing a Data Management Plan and includes guidance specific to JHU. See Preparing Data Management Plans for more information.
Note that JHU has a policy on data access and retention, as well as rules for the responsible conduct of research., which include requirements for data storage, retention, and ownership. Individual schools and sponsors may have additional requirements.
School of Medicine policy RI002: Rules and Guidelines for Responsible Conduct of Research
School of Nursing Rules and Guidelines for Responsible Conduct of Research
Whiting School of Engineering and Krieger School of Arts and Sciences Responsible Conduct of Research Policy
Many US funders, both federal and private, now require grantees to provide a data management or sharing plan and to have their data available at the end of funded projects. NIH announced a new policy that goes into effect January 2023. NSF and other major funders have requirements related to data sharing. The following organizations offer overviews of data-related funder mandates and public access plans.
In many cases, regulations and ethics impact what data can or should be shared. Many ethical issues can be addressed through the consent process. Research participant consent forms should detail specifically what data will be shared and how broadly it will be shared. Funders and Institutional Review Boards may offer sample consent language to facilitate ethical compliance with data sharing requirements. The researcher must ensure that the language aligns with the planned sharing of data.
Homewood IRB – Investigators
Contains guidance and other resources for investigators using the Homewood IRB.
Johns Hopkins Medicine Institutional Review Board Forms
Contains links to protocol and consent forms that help researchers plan for data sharing.
School of Public Health IRB Guidance
Contains links to education, guidance and forms for consent and special research topics related to ethics and compliance.
National Congress of the American Indians (NCAI) Policy Research Center
Provides resources to facilitate ethical research involving tribal communities in the United States.
Funders may or may not be explicit about where to share data. The following resources can aid in the selection of a data sharing repository. When choosing a repository, consider how well it aligns with the ethical and regulatory considerations relevant to your data. Also consider any repository-specific requirements for data. These may impact the formatting of data, and accounting for these requirements may inform the project budget, organization of research data, the collection of metadata, and the selection of supporting systems. JHU Data Services and Welch Medical Library can help locate appropriate repositories.
Data Sharing Repositories
Links to lists of NIH-supported and generalist repositories and resources related to data sharing.
JHM Data Sharing Tiers
Guidance related to the sharing of JHM clinical data in a repository.
JHU Data Archive
A repository for Johns Hopkins researchers to openly share, archive, and get citations for their data.
A searchable registry of research data repositories.
Many funders allow costs related to sharing to be included in the grant budget. Consider what costs the project will incur as a result of sharing data. These include costs for data preparation, repository subscription or signup, and infrastructure.
NOT-OD-21-015 – Supplemental Information to the NIH Policy for Data Management and Sharing: Allowable Costs for Data Management and Sharing
Outlines categories of allowable NIH costs associated with data management and sharing.
Highlights allowable and unallowable costs under conference grants.
From NOT-OD-21-014: “A Plan should reflect the proposed approach to data management and sharing at the time it is prepared and be updated during the course of the award/support period to reflect any changes in the management and sharing of scientific data (e.g., new scientific direction, new repository option, timeline revision).”
JHU Data Services
Provides free consultations and a wealth of resources to members of the Johns Hopkins community.
Welch Medical Library
Provides expert information services to faculty, staff and students in Johns Hopkins Medical Institutions.
Detailed information regarding data management with respect to human subject research can be found here.
Data Protection Laws of the World (DLA PIPER) – Compare data protection laws around the world.