Promote Your Registry
Manage and Share Data
To access your registry’s data, researchers will need to request permission to acquire the data. Provide a means for these potential end users to contact you (via email, your website, social media, or other means). Before you grant this access, determine how you will:
- Control the type of data provided to end users
- Manage requests for the data
- Prioritize data security and participant privacy
Create a data management plan to address the process for receiving data requests:
- How will researchers make their requests?
- Who will respond to data requests and answer any data-related questions?
- In what format will researchers receive data?
- Will researchers be able to contact registry participants anonymously via surveys, or only access data you have already collected?
- How will you ensure the data are used responsibly?
Draft a data user agreement (DUA), which must be entered into before any data is used or disclosed. The DUA should include, at minimum, the following:
- Permitted uses and disclosures of the limited data set
- Who may use or receive the information
- Statement of no use or further disclosure of the information other than as permitted by the agreement or as otherwise permitted by law
- Use of appropriate safeguards to prevent an unauthorized use or disclosure
- Reporting any use or disclosure of the data not allowed by the agreement
- Understanding that registry participants will not be identified or contacted