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Abstract Details

An Update of Study of ALS Reversals: LifeTime Exposures (StARLiTE)
Neuromuscular and Clinical Neurophysiology (EMG)
P1 - Poster Session 1 (5:30 PM-6:30 PM)
12-018

To provide an update on our study of ALS Reversals including lifetime environmental exposure correlates.

 

We have previously identified 38 cases of “ALS Reversals” (1,2). These cases are defined as patients whom initially presented with a progressive ALS-like disease and met El Escorial-Revised criteria for ALS. These cases of “Reversals” subsequently exhibited a robust and sustained improvement in their disease on at least one objective measure. We previously published a description of the demographics, disease characteristics, treatments and co-morbidities of these cases with statistical comparisons to the available control-arm data from the PRO-ACT database of ALS clinical trials (1).

The National ALS Registry is a congressionally mandated survey that attempts to determine environmental correlates to the development of ALS. Patients with ALS in the United States are encouraged to complete this survey.

1. Harrison D,  et al. “ALS Reversals”: demographics, disease characteristics, treatments, and co-morbidities. ALS & FTD. 2018; 10.1080/21678421.2018.1457059.

2. Crayle J and Bedlack R. Unpublished Data.

 

Approximately twenty contactable patients whom have had an ALS Reversal were administered the National ALS Registry survey. This is a 17-part survey that extensively assesses lifetime exposures to various chemical compounds through occupation, home use, and hobbies. It also assesses history of vigorous physical activity, tobacco and alcohol use, head and neck traumas, electrical shocks, family history of neurologic disease, and limited aspects of past medical, obstetric, and gynecologic history. We will compare the data collected from this survey to the National ALS Registry survey data already collected from 1700 patients with presumably typically progressive ALS.

 

Comparisons between cases of ALS Reversals and patients with typically progressive ALS on a large array of environmental exposures will be available at time of presentation.

 

We hypothesize that there will be differences in lifetime exposures between cases of ALS Reversals and patients with typically progressive ALS.

 

Authors/Disclosures
Jesse Crayle, MD
PRESENTER
No disclosure on file
Jaime Raymond Jaime Raymond has nothing to disclose.
Paul Mehta Paul Mehta has nothing to disclose.
Richard S. Bedlack, MD, PhD, FAAN Dr. Bedlack has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Guidepoint Global. Dr. Bedlack has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for New Biotic. Dr. Bedlack has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Woolsey Pharma. Dr. Bedlack has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Amylyx. Dr. Bedlack has received personal compensation in the range of $500-$4,999 for serving as a Consultant for ITF Pharma. Dr. Bedlack has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Mitsubishi Tanabe America. Dr. Bedlack has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Orphazyme. Dr. Bedlack has received personal compensation in the range of $500-$4,999 for serving as a Consultant for AB Scicence. Dr. Bedlack has received personal compensation in the range of $100,000-$499,999 for serving as a Consultant for ALS Association. Dr. Bedlack has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Adept Field Solutions. Dr. Bedlack has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Apellis. Dr. Bedlack has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Black Swan. Dr. Bedlack has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Clarivate. Dr. Bedlack has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Clearview. Dr. Bedlack has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Clean. Dr. Bedlack has received personal compensation in the range of $500-$4,999 for serving as a Consultant for CM Group. Dr. Bedlack has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Corcept. Dr. Bedlack has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Cytokinetics. Dr. Bedlack has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Health Advances. Dr. Bedlack has received personal compensation in the range of $500-$4,999 for serving as a Consultant for MT Pharma America. Dr. Bedlack has received personal compensation in the range of $500-$4,999 for serving as a Consultant for MJH Healthcare. Dr. Bedlack has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Maple Health Care. Dr. Bedlack has received personal compensation in the range of $500-$4,999 for serving as a Consultant for National Association of Managed Care Physicians. Dr. Bedlack has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Projects in Knowledge. Dr. Bedlack has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Shinkei Pharma. Dr. Bedlack has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Webb MD/Medscape. Dr. Bedlack has received personal compensation in the range of $500-$4,999 for serving as a Consultant for UCB Pharma. Dr. Bedlack has received personal compensation in the range of $10,000-$49,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Brainstorm Cell. Dr. Bedlack has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Mallinkrodt. Dr. Bedlack has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Biogen. Dr. Bedlack has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Alexion . Dr. Bedlack has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Neurosense. Dr. Bedlack has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for PTC Therapeutics. Dr. Bedlack has received personal compensation in the range of $10,000-$49,999 for serving on a Speakers Bureau for Amylyx. Dr. Bedlack has received personal compensation in the range of $10,000-$49,999 for serving as an officer or member of the Board of Directors for GenieUS. The institution of Dr. Bedlack has received research support from Cytokinetics. The institution of Dr. Bedlack has received research support from Orion. The institution of Dr. Bedlack has received research support from Ultragenyx. The institution of Dr. Bedlack has received research support from MediciNova. The institution of Dr. Bedlack has received research support from Healey Center. Dr. Bedlack has received publishing royalties from a publication relating to health care.