How will my data be used?

Information entered into the RARE Registry by you and by other participants will contribute to a powerful real-time database that can accelerate research focused on these rare subtypes of melanoma. Your information will be de-identified (personally identifiable factors are removed) when sharing with researchers, other participants, or third parties following guidance provided by the U.S. Department of Health and Human Services (HHS) to comply with the Health Insurance Portability and Accountability Act (HIPAA) Privacy Rule.