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Abstract Details

Beliefs and Attitudes of Neurology Clinicians on Stiff Person Syndrome: A National Survey on Diagnosis and Management
Autoimmune Neurology
P2 - Poster Session 2 (8:00 AM-9:00 AM)
8-005
To evaluate practicing and trainee neurologists' beliefs and attitudes regarding the diagnosis and management of Stiff Person Syndrome (SPS).
SPS is a rare and frequently misdiagnosed neurological disorder. This cross-sectional survey gathered neurology clinicians experiences with SPS diagnosis and management.

An online survey was distributed from 03/2024 to 08/2024 globally. USA based neurology residency and fellowship programs, as well as organizations such as the Consortium of Multiple Sclerosis Centers, SPS research foundation, Cleveland Clinic and University of Washington alumni also assisted in dissemination.
Of 126 respondents, 51% were trainees (residents and fellows) and 46% practicing neurologists. Practicing neurologists had a median of 10 years of post-training experience. Most respondents (75%) worked in academic centers, and 69% had seen fewer than 10 SPS patients. Only 17% were confident in diagnosing SPS. Twenty-six percent of respondents referred patients for subspecialty evaluation, most commonly to neuroimmunology. Fewer than 45% recognized clinical signs such as exaggerated startle reflex and hyperlordosis. For diagnostic testing, 80% ordered glutamic acid decarboxylase-65 (GAD65) antibodies, 49% tested other antibodies, 37% ordered CSF analysis, and 31% utilized electromyography. 50% of respondents identified the typical GAD65 antibody titers associated with neuroimmunity. In making a diagnosis, 39% were familiar with different proposed diagnostic criteria. 48% reported being unsure of identifying atypical presentation of SPS. Preferred drug choices most commonly reported were benzo/baclofen for symptom management (65%), IVIG for acute episodes (41%) and maintenance (39%). Non-pharmacological therapies such as massage, acupuncture etc. were recommended by 27% of respondents. Data from further multivariate analysis to associated practice patterns based on demographics will be presented at the AAN conference.
Our findings highlight the need for improved education in diagnosing and managing SPS.
Authors/Disclosures
Divya Arya, MD
PRESENTER 		Dr. Arya has nothing to disclose.
Yujie Wang, MD (UW Northwest) Dr. Wang has received personal compensation in the range of $500-$4,999 for serving as a Consultant for TG Therapeutics. The institution of Dr. Wang has received research support from Genentech. The institution of Dr. Wang has received research support from uniQure. The institution of Dr. Wang has received research support from NIH/NINDS.
Annette Wundes, MD, FAAN (University of Washington) The institution of Dr. Wundes has received research support from Benaroya Research Institute .
Gloria Von Geldern, MD, FAAN (University of Washington) The institution of Dr. Von Geldern has received research support from Novartis. The institution of Dr. Von Geldern has received research support from Contineum Therapeutics. Dr. Von Geldern has received personal compensation in the range of $0-$499 for serving as a DSMB member with NIH, NINDS. Dr. Von Geldern has a non-compensated relationship as a editorial board member with MS and Related Disorders Journal that is relevant to AAN interests or activities.
Gloria Hou, MD Dr. Hou has nothing to disclose.
Sarah B. Simmons, MD, PhD (Cleveland Clinic Foundation - Cleveland, Oh) The institution of Dr. Simmons has received research support from National Multiple Sclerosis Society.
Michael J. Persenaire, MD (University of Washington) Dr. Persenaire has nothing to disclose.
Elisa A. McGee Ms. McGee has nothing to disclose.
Wenxuan Xiong, PhD Dr. Xiong has nothing to disclose.
Shuvro Roy, MD (University of Washington) Dr. Roy has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Amgen. Dr. Roy 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. Roy 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. Roy has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Alexion. The institution of Dr. Roy has received research support from The Siegel Rare Neuroimmune Association.