How will the RARE registry share my data with researchers and doctors world-wide?
We hope that data from the RARE registry will help research and clinical trial progress more quickly and efficiently for patients with acral and mucosal melanoma.
The RARE Registry includes a Research Portal that compiles data and releases it to researchers and clinicians in two ways.
- The RARE Registry includes an open-access data portal that shows visualizations of de-identified, aggregate results of participant entered and associated clinical data in the form of compiled graphs, charts, and tables.
- MRA can provide researchers access to more detailed, non-aggregated de-identified data. To apply, researchers need to submit a proposal describing the intent of their use of data from the RARE Registry, which must be reviewed and approved by the MRA. Following an approved proposal, the researcher signs an official data use agreement (DUA) with the MRA.