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Abstract Details

The Rasch-Built Overall ALS Disability Scale: ROADS to a better ALS outcome measure
Neuromuscular and Clinical Neurophysiology (EMG)
S35 - Amyotrophic Lateral Sclerosis (4:06 PM-4:18 PM)
004

To combine clinical expertise with mathematically rigorous Rasch methodology to develop a new self-reported ALS disability scale with improved responsiveness and reliability compared to the ALSFRS-R.
Rasch analysis is a modern test-theory technique that produces validated, reliable, linearly-weighted scales with meaningful overall disability scores for use in clinical trials.  
A preliminary ALS disability questionnaire with 119 questions was created based on literature review, clinical judgement of an expert panel, and patient input.  Each question is scored “2” if the activity is performed without difficulty, “1” if the item is performed with difficulty or with assistance from a device or person, or “0” if the activity is unable to be performed.  A total of 264 patients were recruited to complete the draft questionnaire and standard ALS outcome measures.  Rasch analyses and standard scale metrics were performed on the new questionnaire, and Rasch analyses were performed on the ALSFRS-R for comparison.    

Items were systematically removed from the draft questionnaire based on missing data, model fit, disordered thresholds, item bias, and clinical judgement to successfully construct the final 28-question Rasch-built Overall ALS Disabilty Scale (ROADS). The ROADS fulfilled Rasch model requirements, demonstrated improved item targeting compared to the ALSFRS-R, and had test-retest reliability of 0.97. The ALSFRS-R violated Rasch model expectations and demonstrated disordered thresholds for 9/12 questions; 13 out of 48 answer choices on the ALSFRS-R are never the most probable answer choice for any overall disability level.

We successfully created and validated a 28-question, self-report Rasch-built Overall ALS Disability Scale that is linearly-weighted, has improved item targeting compared to the ALSFRS-R, and has high test-retest reliability.  We expect the ROADS to serve as a valuable and easily accessible outcome measure for use in ALS trials and in the clinic with improved responsiveness compared to the ALSFRS-R.    
Authors/Disclosures
Christina N. Fournier, MD, MSc (Emory University)
PRESENTER 		Dr. Fournier has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Novartis. Dr. Fournier has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Roon. Dr. Fournier has received personal compensation in the range of $500-$4,999 for serving as a Consultant for QurAlis. Dr. Fournier has received personal compensation in the range of $0-$499 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for Springer Journals. The institution of Dr. Fournier has received research support from Veterans Affairs. The institution of Dr. Fournier has received research support from Department of Defense. The institution of Dr. Fournier has received research support from Amylyx. The institution of Dr. Fournier has received research support from Biogen. The institution of Dr. Fournier has received research support from MT Pharma. The institution of Dr. Fournier has received research support from Columbia University. The institution of Dr. Fournier has received research support from Denali.
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.
Colin Quinn, MD (University of Pennsylvania) Dr. Quinn has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Amylyx Pharmaceuticals. Dr. Quinn has received personal compensation in the range of $0-$499 for serving as a Consultant for Amicus. Dr. Quinn has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Sarepta Therapeutics. Dr. Quinn has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Biogen. Dr. Quinn has received personal compensation in the range of $0-$499 for serving as a Consultant for Clene Nanomedicine. Dr. Quinn has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Sanofi. Dr. Quinn has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Partners Health Care. Dr. Quinn has received personal compensation in the range of $10,000-$49,999 for serving as an Expert Witness for Robins Kaplan.
James A. Russell, DO, FAAN Dr. Russell has received publishing royalties from a publication relating to health care.
No disclosure on file
No disclosure on file
William R. Tyor, MD, FAAN (Atlanta VAMC) The institution of Dr. Tyor has received research support from NIH. The institution of Dr. Tyor has received research support from VHA. The institution of Dr. Tyor has received research support from NIH. The institution of Dr. Tyor has received research support from VHA. The institution of Dr. Tyor has received research support from NIH.
No disclosure on file
No disclosure on file
No disclosure on file
Jonathan D. Glass, MD (Emory University School of Medicine) Dr. Glass has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Biogen. Dr. Glass has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Apic Bio. Dr. Glass has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for CIRM. Dr. Glass has received personal compensation in the range of $500-$4,999 for serving as an Expert Witness for Bryan Cave Leighton Paisner. The institution of Dr. Glass has received research support from NIH. The institution of Dr. Glass has received research support from ALS Assoiciation. The institution of Dr. Glass has received research support from Muscular Dystrophy Assoication.