Approved scientists, researchers, and clinicians, will be given only the de-identified information and may search the de-identified data for patients for their studies. If an affected individual looks like a good match for a specific study, the researcher will contact the Registry. A Registry staff member will then contact the participant or the participant's family. Researchers will not directly contact participants or their families as they will only see de-identified data. It will be the choice of the Registry participant or their family to decide to initiate direct contact with the interested researcher.