One of the sponsoring organizations had a big PRO_ACT blurb on its facebook page. It certainly was a logical place for someone to ask if there might be some synergy between the PRO-ACT database of ALS clinical trial patients' data and the U.S. National ALS Registry of ALS patients' data. After all, this is the 21st Century and data silos should be a thing of the past, right?
The exchange below leaves me at a loss for words.
The National ALS Registry is not a database of information for patients and their families. It is a registry of virtually all cases of ALS in the United States. It is meant to be a repository that can be useful for researchers. It is an epidemiological tool.
There are two clear problems here --
1. The messaging about the U.S. National ALS Registry still isn't working.
2. Our ALS organizations still don't talk to each other very well.