In this program, we will be looking for mimickers and endogenous mechanisms that might make someone more resistant to ALS.
- Confirmed cases of ALS in which there is progression, then dramatic, sustained improvement in at least 1 objective measure.
- Requires our review of medical records related to ALS diagnosis and to improvement.
When a person with a confirmed diagnosis of ALS unexpectedly improves on validated ALS outcome measures, there are the following possible explanations:
- They may have an ALS mimicker.
- They may have an unusaul form of ALS to start with.
- They may have innate compensatory mechanism that allows them to fight off the disease.
- They may be doing something that is helping them.
We have joined forces with groups all over the world to better understand ALS reversals. With :
- Duke ALS Clinic we are databasing demographics, disease characteristics, co-morbidities and treatments.
- CReATe we are sequencing whole genomes.
- Duke Neuroradiology we are looking at neuroimaging .
- NIH Neurobiobank we are examing tissue histology.
- National ALS Registry we are reviewing environmental exposures.
- ALS TDI we are exploring additional genetic, RNA and protein signatures.
- Duke Microbiome Center we are elucidating the gut microbiome and comparing it to people with more typical ALS progression rates.