How will my data be shared?

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How will my data be shared?

Your de-identified study information will also be shared with one or more government or private databases developed to make data accessible to researchers. Some examples of databases are the NIH databases, Global Rare Disease Patient Registry Data Repository (GRDR), the Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP) and RARE-X. The data may be the combined data of many people or individual level data. This will allow more researchers to use the information to do research.