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Abstract Details

Health Utilities and Acceptable States in Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) – Preliminary data
Neuromuscular and Clinical Neurophysiology (EMG)
P13 - Poster Session 13 (5:30 PM-6:30 PM)
1-003
Current guidelines for assessing CIDP patients and their response to treatment are centered on expert definitions of good outcomes. While there are several CIDP patient-reported measures, we currently do not have a patient-anchored definition of what constitutes a “good” outcome. Therefore, we do not have a clear threshold when to escalate or stop CIDP treatment from the patient perspective. 
We aim to understand how CIDP patients value their current health, by assessing CIDP health utilities and what factors influence these values. Furthermore, we will estimate the minimal burden of symptoms that patients can tolerate, defined as the patient acceptable symptom state (PASS) for commonly used outcomes in CIDP.
We are currently conducting an online-survey asking CIDP patients general demographic and clinical questions. Additionally, participants are asked a set of PASS questions on symptom severity and treatment satisfaction.
To date, 28 participants have answered the online CIDP survey, 16 of which were female. The average age of the participants was 56.14±14.73 years with half of the respondents reporting to have had CIDP for more than 5 years.  In total, 15 individuals considered their current disease severity as satisfactory (PASS-positive) while 12 participants did not (PASS-negative). In contrast, almost all of the participants (26) stated their current treatment regimen was acceptable. Compared to PASS-positive participants, PASS-negative individuals had slightly worse scores in quality of life and disease severity with no differences in age, distribution of sex, disease status or disease duration.   
Our preliminary data show that PASS-positive patients can be satisfied with their current disease state despite having only slight differences to PASS-negative patients. Upon the completion of our study, we will be able to determine the quality of life and disease severity thresholds anchored by patient satisfaction which can aid in clinical treatment decisions. 
Authors/Disclosures

PRESENTER 		No disclosure on file
Hans D. Katzberg, MD, FÂ鶹´«Ã½Ó³»­ An immediate family member of Dr. Katzberg has received personal compensation for serving as an employee of Alexion. Dr. Katzberg has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Argenx. Dr. Katzberg has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for UCB. Dr. Katzberg has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Roche. Dr. Katzberg has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Dyne. Dr. Katzberg has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Merz. Dr. Katzberg has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for CSL Behring. Dr. Katzberg has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Johnson and Johnson. Dr. Katzberg has received personal compensation in the range of $10,000-$49,999 for serving on a Scientific Advisory or Data Safety Monitoring board for UCB. Dr. Katzberg has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Syneos Health. Dr. Katzberg 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. Katzberg has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for ArgenX.
Vera Bril, MD (Toronto General Hospital) Dr. Bril has received personal compensation in the range of $500-$4,999 for serving as a Consultant for UCB. Dr. Bril has received personal compensation in the range of $500-$4,999 for serving as a Consultant for CSL. Dr. Bril has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Alnylam. Dr. Bril has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Janssen. Dr. Bril has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Grifols. Dr. Bril has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Takeda. Dr. Bril has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Octapharma. Dr. Bril has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Pfizer. Dr. Bril has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Powell Mansfield. Dr. Bril has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Akcea. Dr. Bril has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Ionis. Dr. Bril has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Immunovant. Dr. Bril has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Sanofi. Dr. Bril has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Roche. Dr. Bril has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Momenta (now J&J). Dr. Bril has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Alexion. Dr. Bril has received personal compensation in the range of $500-$4,999 for serving as a Consultant for NovoNordisk. Dr. Bril has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Takeda. Dr. Bril has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Immunovant. Dr. Bril 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. Bril has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Akcea. Dr. Bril has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Sanofi. Dr. Bril has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Alnylam. Dr. Bril has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for CSL. Dr. Bril has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Argenx. The institution of Dr. Bril has received research support from UCB. The institution of Dr. Bril has received research support from Argenx. The institution of Dr. Bril has received research support from Momenta (now J&J). The institution of Dr. Bril has received research support from Immunovant. The institution of Dr. Bril has received research support from Alexion. The institution of Dr. Bril has received research support from Takeda. The institution of Dr. Bril has received research support from Grifols. The institution of Dr. Bril has received research support from CSL. The institution of Dr. Bril has received research support from Octapharma. The institution of Dr. Bril has received research support from Akcea. The institution of Dr. Bril has received research support from Ionis. The institution of Dr. Bril has received research support from Viela Bio (now Horizon). Dr. Bril has received intellectual property interests from a discovery or technology relating to health care.
Carolina Barnett Tapia, MD Dr. Barnett Tapia has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Argenx. Dr. Barnett Tapia has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Janssen. Dr. Barnett Tapia has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for UCB. Dr. Barnett Tapia has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Novartis. Dr. Barnett Tapia has received personal compensation in the range of $500-$4,999 for serving as a Consultant for NMD pharma. Dr. Barnett Tapia 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. Barnett Tapia has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for argenx. Dr. Barnett Tapia has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Janssen. Dr. Barnett Tapia has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for UCB. Dr. Barnett Tapia has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for argenx. The institution of Dr. Barnett Tapia has received research support from Department of defense. The institution of Dr. Barnett Tapia has received research support from Muscular dystrophy canada. The institution of Dr. Barnett Tapia has received research support from MgNet. The institution of Dr. Barnett Tapia has received research support from NIH. The institution of Dr. Barnett Tapia has received research support from Cartesian. The institution of Dr. Barnett Tapia has received research support from Alexion. Dr. Barnett Tapia has received intellectual property interests from a discovery or technology relating to health care.