Global C9orf72 Data Registry

C9orf72 research data is scattered across hospitals, universities, and countries. The most valuable samples in the field come from carriers who were tracked before and after their disease began — blood, spinal fluid, and clinical records from when they were still healthy, and again after symptoms started. There are less than two dozen documented in the US alone, and not all in the same place. Those samples are rare, precious, and the key to answering the biggest questions carriers face: can we predict who will get ALS versus FTD, how early can we detect it, and are there subtypes we are missing that may require different treatments? But most scientists worldwide are working with ten or fewer of these samples because no one knows where the rest are, what was collected, or how to access them. This registry brings all of that information into one searchable place.