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