Seldom Am I This Speechless

This week the PRO-ACT database was announced.  It is wonderful that ALS clinical trial data will be shared and opened up for researchers to access. 

www.alsdatabase.org

http://www.pharmatimes.com/Article/12-12-06/PRO-ACT_trial_database_looks_to_accelerate_ALS_drug_discovery.aspx

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.