Know Your Disease Landscape
Identify Registry Stakeholders
You can set your registry up for success by identifying stakeholders early in the registry development process. Involving these individuals can help ensure that you have brought together people who possess the necessary skills and expertise to create and manage a registry. Speaking with the different members of your community either online (e.g., through forums, social media, websites) or in person (e.g., through talks, conferences, events) can help you determine the current understanding of your disease. Determine the main objectives of each stakeholder and clearly define the expected contributions for each role.
Registry stakeholders may include the following: