Understand Data Principles

Learn About Data Ownership

Before joining a registry, people may want to know who will own the data they share. Data ownership refers to having legal rights and complete control over the data. Ownership of this information should be clearly communicated to participants, stakeholders, and sponsors of the registry. In many cases, the sponsors are the owners of the data. When there is more than one sponsor, it is important to determine which sponsors own the data. Your registry should also decide who will own any intellectual property resulting from the registry (e.g., tools, forms, reports, analyses, and biosamples). Participants will need to trust that your registry is acting in their best interest.

Data owners need to remember the FAIR principles when determining how they plan to handle the sharing of their registry’s data. They should also appreciate that data sharing is critical for learning more about their rare disease and advancing research. In an effort to facilitate data sharing, they should create a data management plan and data-sharing agreement. Some considerations include the following:

  • Who will access the data?
  • For how long can they access the data?
  • What is the process for granting access to the data?
  • What is the process for requesting access to the data?
  • Will results/findings be communicated to registry participants?