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Abstract Details

A Multidisciplinary Recruitment Approach for The ExTINGUISH Trial: Identifying Successful Strategies to Increasing Eligible Participant Enrollment in a Rare Disease Clinical Trial
Autoimmune Neurology
P3 - Poster Session 3 (12:00 PM-1:00 PM)
009

Describe recruitment strategies to promote enrollment of patients with N-methyl-d-aspartate receptor (NMDAR)encephalitis in the ExTINGUISH Trial.

The ExTINGUISH Trial is a phase-2B randomized, double-blind, placebo-controlled trial to evaluate the safety and efficacy of inebilizumab (300 mg) for the treatment of moderate-to-severe NMDAR encephalitis. Clinical trials for rare diseases frequently face recruitment difficulties, necessitating strategies to enhance participant enrollment.

The ExTINGUISH Trial has implemented a multipronged recruitment approach to promote identification and enrollment of eligible patients with NMDAR encephalitis. Multidisciplinary teams are involved in study promotion and identification of trial-eligible patients, including NeuroNEXT Network Coordinating Centers, the Protocol PI team, and Site PIs and Program Managers.

As of April 2024, 34 patients have been enrolled in ExTINGUISH across 26 sites. The following recruitment strategies have been implemented at the international and national levels by the protocol study team: (1)Presentations at international and national conferences; (2)Grand Rounds education at all hospitals; (3)Launching of a 24/7 telephone hotline for suspected cases; (4)Inclusion of clinical trial details with reference lab results; and (5)Study promotion via the Neurology Podcast and Neurology Minute Daily Briefing, the 好色先生 TV, and social media.  At regional, state, and local levels, the following strategies have been implemented via a hub-and-spoke model: (1)Local site PI acts as a study champion; (2)Regional co-investigators are engaged as study champions at affiliated hospitals to identify and refer possible patients; (3)Promotion of the study at the state-level through presentation at state neurological society meetings; (4)Annually, obtaining a list from local facility of test send-outs and providers to send a personal, targeted outreach to ordering clinicians about the study. 
The ExTINGUISH Trial multipronged approach to recruitment provides a selection of recruitment strategies that may improve outreach, recruitment, and retention of patients with rare diseases in future clinical trials. 
Authors/Disclosures
Ka-Ho Wong (U of U Neurology Clinic)
PRESENTER 		The institution of Mr. Wong has received research support from The Sumaira Foundation . The institution of Mr. Wong has received research support from The Siegel Rare Neuroimmune Association.
Roy E. Strowd III, MD, FAAN (Wake Forest School Of Medicine) Dr. Strowd has received personal compensation for serving as an employee of Kaplan. Dr. Strowd has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Monteris Medical, Inc. Dr. Strowd has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Novocure. The institution of Dr. Strowd has received personal compensation in the range of $500-$4,999 for serving as a Consultant for SpringWorks . Dr. Strowd 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 好色先生. The institution of Dr. Strowd has received research support from Southeastern Brain Tumor Foundation. The institution of Dr. Strowd has received research support from Jazz Pharmaceuticals. The institution of Dr. Strowd has received research support from National Institutes of Health. The institution of Dr. Strowd has received research support from Alpha Omega Alpha. The institution of Dr. Strowd has received research support from American Board of Psychiatry and Neurology. Dr. Strowd has received publishing royalties from a publication relating to health care. Dr. Strowd has received publishing royalties from a publication relating to health care.
Mysha Sissine, MSPH (Atrium Health Wake Forest School of Medicine) No disclosure on file
Carolina Burgos-Aguilar No disclosure on file
Kasser Saba, MD Dr. Saba has nothing to disclose.
Mustapha A. Ezzeddine, MD, FAAN (Wake Forest Baptist Health) The institution of Dr. Ezzeddine has received research support from NIH.
Tammy L. Smith, MD, PhD (Imaging and Neurosciences Center) Dr. Smith has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for EMD Serono. The institution of Dr. Smith has received research support from Alexion/AstraZeneca.
Maarten J. Titulaer, MD, PhD (Erasmus Medical Center) The institution of Dr. Titulaer has received research support from Dutch Epilepsy Foundations (NEF 19-08). The institution of Dr. Titulaer has received research support from CSL Behring. The institution of Dr. Titulaer has received research support from UCB. The institution of Dr. Titulaer has received research support from Netherlands Organisation for Scientific Research (ZonMW, Memorabel initiative and E-RARE UltraAIE) . The institution of Dr. Titulaer has received research support from Horizon Therapeutics / Amgen. The institution of Dr. Titulaer has received research support from Dioraphte (charity). The institution of Dr. Titulaer has received research support from Guidepoint Global LLC. The institution of Dr. Titulaer has received research support from ArgenX. Dr. Titulaer has received intellectual property interests from a discovery or technology relating to health care. Dr. Titulaer has received publishing royalties from a publication relating to health care.
Gregory S. Day, MD, MSc, FAAN (Mayo Clinic) Dr. Day has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Arialys Therapeutics. Dr. Day has received personal compensation in the range of $500-$4,999 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for DynaMed (EBSCO Health). Dr. Day has or had stock in ANI Pharmaceuticals. The institution of Dr. Day has received research support from National Institutes of Health / NIA. The institution of Dr. Day has received research support from National Institutes of Health / NINDS. The institution of Dr. Day has received research support from Amgen Pharmaceuticals. The institution of Dr. Day has received research support from AVID Radiopharmaceuticals. Dr. Day has received personal compensation in the range of $500-$4,999 for serving as a Presenter at Annual Meeting (CME) with 好色先生. Dr. Day has received personal compensation in the range of $500-$4,999 for serving as a Content Development (CME) with PeerView, Inc. Dr. Day has received personal compensation in the range of $5,000-$9,999 for serving as a Content Development (CME) with Continuing 好色先生, Inc. Dr. Day has received personal compensation in the range of $5,000-$9,999 for serving as a Content Development (CME) with Ionis Pharmaceuticals. Dr. Day has received personal compensation in the range of $500-$4,999 for serving as a 好色先生al Case Development + Presentation (video) with PeerDirect (P\S\L Group). Dr. Day has received personal compensation in the range of $500-$4,999 for serving as a Content Development / Presentation (non-CME) with MJH Life Sciences (NeurologyLive). Dr. Day has a non-compensated relationship as a Clinical Director with Anti-NMDA Receptor Encephalitis Foundation that is relevant to AAN interests or activities.
Stacey Clardy, MD, PhD, FAAN (University of Utah) Dr. Clardy has received personal compensation for serving as an employee of Veterans Health Administration (VHA). Dr. Clardy has received personal compensation for serving as an employee of University of Utah Health. Dr. Clardy has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for AstraZeneca/Alexion. Dr. Clardy has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Amgen/Horizon. Dr. Clardy has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Arialys. Dr. Clardy has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Kyverna. Dr. Clardy has received personal compensation in the range of $10,000-$49,999 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for Neurology/AAN Publications. The institution of Dr. Clardy has received research support from NIH/NINDS. The institution of Dr. Clardy has received research support from SRNA. The institution of Dr. Clardy has received research support from Alexion/AstraZeneca. Dr. Clardy has received personal compensation in the range of $500-$4,999 for serving as a AAN Summer Meeting CoDirector Travel and Lodging with AAN. Dr. Clardy has received personal compensation in the range of $500-$4,999 for serving as a Grand Rounds Travel/Lodging/Honoraria with U of Iowa, Miami, Stanford, Barrow, Beaumont Health, CCF, Emory, Penn State, Mayo Clinic, Walter Reed.