ALS (Amyotrophic Lateral Sclerosis) is a serious neurological condition in need of better treatments. Our understanding of ALS is inadequate. We learn best about a condition from the people living with it.
The ALS Natural History Consortium is a group of ALS care centers and a leading data management center determined to help us learn more about ALS from the people living with it. Our approach is to gather the full set of information learned about people living with ALS in the course of their care, so that researchers can use that information to advance our understanding of ALS and develop clinical trials to find better treatments. In particular, we endeavor to approach all people seen in our ALS clinical centers for their consent for de-identified data collection, to learn as much as possible about all manifestations of this heterogeneous condition, and to represent, as well as we can, the diversity of the disease and the people it affects.
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For more information, contact Valerie Ferment, Project Manager: ferm0016@umn.edu
For data requests, contact David Walk, MD, Principal Investigator: walkx001@umn.edu