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Abstract Details

Pediatric multiple sclerosis severity score in a large U.S. cohort
Multiple Sclerosis
S49 - MS Epidemiology and Risk Stratification (2:17 PM-2:28 PM)
008

Investigate the distribution of disease severity in pediatric-onset multiple sclerosis (MS).

Previous studies indicate pediatric-onset MS has a relatively benign disease course compared to adult-onset MS, however, these studies took into account disability measured by the EDSS scale, which focuses largely on locomotor deficits, which are less pronounced in children. There is a need to better characterize disability distribution and accrual in this population.

Data collected prospectively by the U.S. Network of Pediatric MS Centers was reviewed. Patients were stratified by the number of years from first symptoms of MS to EDSS assessment and an MS severity score (MSSS) was calculated per Roxburgh et al. criteria. For each year, the lowest and highest EDSS scores were calculated and then normalized by dividing 1+the number of available assessments. Scores from +/- one year were used to avoid stochastic fluctuations. This value was then multiplied by 10 to provide a range from 0-10 (MSSS = ). Pediatric MSSS scores represented percentiles amongst patients who had the disease for the same disease duration.

In total, 994 patients were reviewed, consisting of 4,349 unique data points. Range of disability in our pediatric cohort at one year from diagnosis was narrower than data published by Roxburgh et al., with EDSS of 0, 1, 1.5, and 2.0, corresponding to the 14th, 40th, 60th, and 76th percentiles compared to adults (7th, 24th, 43rd, 59th). This pattern was maintained at 2, 5, and 10 year’s disease duration (2 years: 14th/5th, 42nd/20th, 64th/37th, and 80th/52nd; 5 years: 13th/3rd, 38th/13th, 60th/26th, and 78th/39th; 10 years: 14th/2nd, 38th/8th, 56nd/15th, and 72nd/21st).

The distribution of disease severity by MSSS scoring in pediatric patients with MS is much more narrow than adults. This could have significant implications on clinical intervention analysis utilizing EDSS scoring alone.

Authors/Disclosures
Jonathan Santoro, MD (Department of Neurology, Children's Hospital Los Angeles)
PRESENTER
Dr. Santoro has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for UCB. Dr. Santoro has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Cycle Pharma.
Michael Waltz No disclosure on file
Leslie A. Benson, MD (Children's Hospital Boston) The institution of Dr. Benson has received research support from ROHHAD Fight, Inc. The institution of Dr. Benson has received research support from Shore Foundation. The institution of Dr. Benson has received research support from Alexion Pharmacuticals. The institution of Dr. Benson has received research support from Biogen, Inc. The institution of Dr. Benson has received research support from NIH. Dr. Benson has received personal compensation in the range of $0-$499 for serving as a consultant with MA Department of public health. Dr. Benson has received personal compensation in the range of $5,000-$9,999 for serving as a consultant with National vaccine injury compensation program.
Mark Gorman, MD The institution of Dr. Gorman has received research support from Pfizer. The institution of Dr. Gorman has received research support from Roche / Genetech .
Soe S. Mar, MD, FAAN (Washington University School of Medicine) The institution of Dr. Mar has received research support from NIH.
Manu S. Goyal, MD Dr. Goyal has received stock or an ownership interest from IBM. The institution of Dr. Goyal has received research support from NIH. Dr. Goyal has received personal compensation in the range of $0-$499 for serving as a Conference attendee with Capital Medical University, Shandong Madic Technology Co Ltd, Tancheng Talent Office.
Manikum Moodley, MD Dr. Moodley has nothing to disclose.
Mary R. Rensel, MD, FAAN Dr. Rensel has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Biogen. Dr. Rensel has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Cycle Pharma. Dr. Rensel has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for genentech. Dr. Rensel has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Novartis . Dr. Rensel has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for EMD Serono. Dr. Rensel 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. Rensel has received personal compensation in the range of $5,000-$9,999 for serving on a Speakers Bureau for Genentech. Dr. Rensel has received personal compensation in the range of $5,000-$9,999 for serving on a Speakers Bureau for TG. Dr. Rensel has received personal compensation in the range of $10,000-$49,999 for serving on a Speakers Bureau for Sanofi. Dr. Rensel has received personal compensation in the range of $10,000-$49,999 for serving on a Speakers Bureau for EMD Serono. Dr. Rensel has received personal compensation in the range of $10,000-$49,999 for serving on a Speakers Bureau for TG. Dr. Rensel has stock in Brain Fresh LLC . The institution of Dr. Rensel has received research support from NMSS. The institution of Dr. Rensel has received research support from Roche- Genentech .
Teri Schreiner, MD, MPH, FAAN (University of Colorado/ Children's Hospital of Colorado) The institution of Dr. Schreiner has received personal compensation in the range of $500-$4,999 for serving as a Consultant for CDC. Dr. Schreiner has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Biogen. The institution of Dr. Schreiner has received research support from Roche Genentech.
Jan-Mendelt Tillema, MD (Mayo Clinic) Dr. Tillema has nothing to disclose.
Moses Rodriguez, MD, FAAN (Mayo Clinic Department Of Neurology) Dr. Rodriguez has received intellectual property interests from a discovery or technology relating to health care.
Lauren B. Krupp, MD, FAAN (NYU Langone Medical Center) Dr. krupp has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Bristol Myers Squibb. Dr. krupp has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Celgene. Dr. krupp has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Medscape. Dr. krupp has received personal compensation in the range of $500-$4,999 for serving as a Consultant for EBIX. Dr. krupp has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Biogen. Dr. krupp has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Hoffman LaRoche. Dr. krupp has received personal compensation in the range of $5,000-$9,999 for serving as an Expert Witness for MMMK. Dr. krupp has received personal compensation in the range of $500-$4,999 for serving as an Expert Witness for Patrick, Dolan, and Kaufman. Dr. krupp has received intellectual property interests from a discovery or technology relating to health care.
Timothy E. Lotze, MD, FAAN (Texas Children's Hospital) Dr. Lotze has received personal compensation in the range of $5,000-$9,999 for serving as an Expert Witness for Department of Justice VICP. The institution of Dr. Lotze has received research support from NIH. The institution of Dr. Lotze has received research support from National MS Society. The institution of Dr. Lotze has received research support from Sarepta Therapeutics. The institution of Dr. Lotze has received research support from PTC THERAPEUTICS. The institution of Dr. Lotze has received research support from Avexis. Dr. Lotze has received publishing royalties from a publication relating to health care. Dr. Lotze has received publishing royalties from a publication relating to health care.
Gregory S. Aaen, MD (Loma Linda University School of Medicine) Dr. Aaen has nothing to disclose.
Jayne Ness, MD (UAB Dept of Pediatrics, Div Pediatric Neurology) An immediate family member of Dr. Ness has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Jan One. The institution of Dr. Ness has received research support from Chugai/Roche. The institution of Dr. Ness has received research support from National Multiple Sclerosis Society. The institution of an immediate family member of Dr. Ness has received research support from NIH. An immediate family member of Dr. Ness has received publishing royalties from a publication relating to health care.
No disclosure on file
Bianca Weinstock-Guttman, MD (Department of Neurology, University At Buffalo) Dr. Weinstock-Guttman has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Biogen. Dr. Weinstock-Guttman has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Genentech. Dr. Weinstock-Guttman has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Novartis . Dr. Weinstock-Guttman has received personal compensation in the range of $500-$4,999 for serving as a Consultant for EMD Serono. Dr. Weinstock-Guttman has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Abbvie. Dr. Weinstock-Guttman has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Genzyme &Sanofi. Dr. Weinstock-Guttman has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Janssen . Dr. Weinstock-Guttman has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Bayer. Dr. Weinstock-Guttman has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Horizon. Dr. Weinstock-Guttman has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Genentech. Dr. Weinstock-Guttman has received personal compensation in the range of $0-$499 for serving on a Scientific Advisory or Data Safety Monitoring board for Novartis. Dr. Weinstock-Guttman has received personal compensation in the range of $5,000-$9,999 for serving on a Speakers Bureau for Biogen. Dr. Weinstock-Guttman has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for Janssen. Dr. Weinstock-Guttman has received personal compensation in the range of $0-$499 for serving as a Reviewer with NIH.
Anita L. Belman, MD, FAAN No disclosure on file
Jennifer Graves, MD, PhD (UCSD) Dr. Graves has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for TG Therapeutics. Dr. Graves has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Horizon. Dr. Graves has received personal compensation in the range of $5,000-$9,999 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for MSJ. The institution of Dr. Graves has received research support from Octave. The institution of Dr. Graves has received research support from Sanofi. The institution of Dr. Graves has received research support from EMD Serono.
Emmanuelle Waubant, MD, PhD, FAAN (USCF MS Center) The institution of Dr. Waubant has received research support from NIH. The institution of Dr. Waubant has received research support from NMSS. The institution of Dr. Waubant has received research support from PCORI. The institution of Dr. Waubant has received research support from Race to Erase MS. The institution of Dr. Waubant has received research support from Roche. The institution of Dr. Waubant has received research support from Department of Defense. Dr. Waubant has received publishing royalties from a publication relating to health care.
No disclosure on file
John W. Rose, MD, FAAN (Imaging and Neurosciences Center) The institution of Dr. Rose has received research support from National Multiple Sclerosis Society. The institution of Dr. Rose has received research support from Guthy Jackson Charitable Foundation. The institution of Dr. Rose has received research support from NIH . The institution of Dr. Rose has received research support from VA. The institution of Dr. Rose has received research support from Biogen. The institution of Dr. Rose has received research support from Friends of MS. Dr. Rose has received intellectual property interests from a discovery or technology relating to health care.
Theron C. Casper, PhD (University of Utah) Dr. Casper has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Aperta Biosciences. The institution of Dr. Casper has received research support from NIH. The institution of Dr. Casper has received research support from The National Multiple Sclerosis Society. The institution of Dr. Casper has received research support from Roche. The institution of Dr. Casper has received research support from Biogen. The institution of Dr. Casper has received research support from UCB.
Tanuja Chitnis, MD, FAAN (Brigham and Women's Hospital) Dr. Chitnis has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Novartis. Dr. Chitnis has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Roche-Genentech. Dr. Chitnis has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Siemens. Dr. Chitnis has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Octave Biosciences. Dr. Chitnis has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Sanofi. The institution of Dr. Chitnis has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Novartis. Dr. Chitnis has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for Academic CME. The institution of Dr. Chitnis has received research support from Novartis. The institution of Dr. Chitnis has received research support from Sanofi. The institution of Dr. Chitnis has received research support from Octave. The institution of Dr. Chitnis has received research support from Genentech-Roche. The institution of Dr. Chitnis has received research support from Tiziana Life Sciences. The institution of Dr. Chitnis has received research support from Bristol-Myers Squibb. The institution of Dr. Chitnis has received research support from Wesley Clover.