Registering Your Study
Registering your study is a simple, three-step process:
- Request access to register your study.
- Create a CEDAR account, if you do not already have one.
- Register your study on the HEAL Data Platform.
After completing registration, the next step will be completing your metadata form in CEDAR.
The HEAL Data Platform provides a single interface where users can browse and search for all HEAL-funded studies as well as other HEAL-relevant datasets. In this way, the Platform plays a fundamental role in making HEAL data findable as part of adhering to the FAIR data principles (i.e., data should be Findable, Accessible, Interoperable and Reusable).
To achieve this goal, the platform aggregates metadata about each study from multiple sources. One of these is NIH RePORTER from which basic information about all HEAL-funded studies is automatically obtained. However, there are three additional sources of metadata which the Platform can utilize:
- Information entered into the Center for Expanded Data Annotation and Retrieval (CEDAR) Workbench, an online platform for creating and managing metadata according to the FAIR principles
- Information from ClinicalTrials.gov for those clinical studies registered there
- Information from the data repository to which the study is submitting its data
To permit the Platform to pull information from these sources, a study must be registered. Registration is the process of linking a study to one or more of the metadata/data sources listed above. This process can be performed by the Principal Investigator or another member of the research team.
What if I'm not ready to submit data yet?
You may register your study at any time, even if you are not yet ready to submit data to a repository. Registering your study increases its visibility on the Platform and allows the Platform and data repository to anticipate and plan for your subsequent data submission.