If you are planning to create a new de-identified dataset to submit to the Health Data Nexus, you must provide the following to the data steward:
- A research plan outlining who is involved in the research and its scientific benefit, and
- Approval from a research ethics board for the research plan
A research plan template and resources to support REB review will be made available, including a list of required clauses describing how the dataset will be hosted.
If you are planning on submitting an existing dataset which has already been de-identified, you must still provide REB approval, including an amendment that adds the clauses describing how the dataset will be hosted.
In addition to REB approval, you must also provide a completed Data Transfer Agreement. Please read and review the Data Transfer Agreement and have it signed by an appropriate authority.
Briefly, the process for submitting a dataset to the Health Data Nexus is as follows:
- If you are the submitting author, create a new dataset application.
- Add your dataset details. These will include contact information for co-authors, a description of your project, and uploading of ethical approvals.
- Once you are satisfied, submit the project for review.
- You will be notified of an editorial decision when the review process is complete.
- Once a dataset is published, its content is fixed and cannot be changed. Dataset updates, including removal of information, are accomplished by publishing new versions through the same process outlined above.
Additional Submission Instructions
- Please ensure that you have added all co-authors to the system and have read the Author Guidelines for a detailed description on how to generate project files and related metadata.
- The structure of the dataset must be clearly described including its content and how the files are organized.
- Links to relevant supporting publications which describe the data's creation or usage may be provided. The authors may provide links to an external website as supplemental documentation. However, the documentation on the Health Data Nexus must be self-contained and sufficient for others to understand and use your data.
Submitting Datasets to the Health Data Nexus
We would love for you to share datasets with the research community on the Health Data Nexus. Some of the benefits of sharing your data include:
- Broader visibility to researchers, including targeted workshops and courses
- Cloud-native platform with no data egress possible, giving greater control over data governance
- Data-use statistics providing useful reporting information for funding agencies
- A centralized model allowing sharing of developed tools and curated derivations of the data
- No cost for you; we are funded to cover all storage and platform fees
In order to submit your work, please review the submission guidelines and author guidelines.