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Abstract Details

Collaboration and Development of Standard Operating Procedures for Prospective Evaluation and Collection of Biospecimens in Neurosarcoidosis
Autoimmune Neurology
P8 - Poster Session 8 (5:30 PM-6:30 PM)
14-005

To establish a comprehensive research protocol for clinical assessment of patients with neurosarcoidosis (NS) to precisely characterize clinical phenotypes, pathogenic mechanisms, and biomarkers in a longitudinal observational cohort study.
Sarcoidosis is a multisystem inflammatory disorder characterized by granulomatous inflammation of affected organs. Central or peripheral nervous system involvement is present in 5-26% of patients with sarcoidosis. There is a need to establish multicenter collaborations to prospectively define clinical profiles and neuroimaging findings and secure biological samples to advance our understanding of the pathogenesis of NS and identify biomarkers of the disease.
We designed a protocol to recruit newly diagnosed or established patients with sarcoidosis with evidence of active neurological disease (defined by clinical manifestations and imaging or cerebrospinal fluid findings). We used clinical tools to characterize neurological function longitudinally. We evaluated mobility, cognition, processing speed, and disability using the Timed 25-Foot Walk, Montreal Cognitive Assessment, Symbol Digit Modalities Test, and Expanded Disability Status Scale. To comprehensively assess patient-reported outcomes, we evaluated health status, fatigue, pain, bladder and bowel control, mental health, perceived deficits, and walking scale. Abbreviated scale versions were selected when available. We established standard operating procedures for neuroimaging assessment, biospecimen collection, and biobanking.

To date, 24 patients with active NS have been recruited at two sites. 50% of patients are male. The median (IQR) age of all enrollees is 55 years (51-62). 

In this multicenter, prospective, observational, federally funded study of NS, we establish an approach to obtain clinical and biological research data along with the standard of care clinical management to facilitate a reliable characterization of clinical and biological profiles in NS patients. This standardized approach can be applied to future studies of NS patients. 
Authors/Disclosures
Susana Dominguez Penuela, MD
PRESENTER 		Dr. Dominguez Penuela has nothing to disclose.
Paula Barreras, MD (Cedars-Sinai Medical Center) Dr. Barreras has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Alexion. The institution of Dr. Barreras has received research support from Foundation for Sarcoidosis Research. The institution of Dr. Barreras has received research support from 好色先生.
Greer Waldrop, MD (UCSF) Dr. Waldrop has nothing to disclose.
Migel Dio No disclosure on file
K. Evan Johnson K. Evan Johnson has nothing to disclose.
Kathryn Fitzgerald, PhD (Johns Hopkins University) Dr. Fitzgerald has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Setpoint Medical. The institution of Dr. Fitzgerald has received research support from NIH. The institution of Dr. Fitzgerald has received research support from National MS Society.
Samuel Pleasure, MD, PhD (UCSF) Dr. Pleasure 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 JAMA Neurology. The institution of Dr. Pleasure has received research support from NINDS, NIMH, NIDA, National MS Society, Brain Research Foundation, John Merck Fund, Whitehall Foundation, Lupus Research Association, Juvenile Diabetes Research Foundation.
H. Benjamin Larman H. Benjamin Larman has received personal compensation for serving as an employee of Infinity Bio. H. Benjamin Larman has or had stock in Infinity Bio.H. Benjamin Larman has received intellectual property interests from a discovery or technology relating to health care.
Michael R. Wilson, MD, FAAN (University of California San Francisco) Dr. Wilson has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Pfizer. Dr. Wilson has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Ouro Medicines. Dr. Wilson has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Vertex Pharmaceuticals. Dr. Wilson has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Indapta Therapeutics. Dr. Wilson has received personal compensation in the range of $50,000-$99,999 for serving as an officer or member of the Board of Directors for Delve Bio. Dr. Wilson has received personal compensation in the range of $500-$4,999 for serving as an Expert Witness for Cambridge Medical Experts. Dr. Wilson has received personal compensation in the range of $5,000-$9,999 for serving as an Expert Witness for Dunham Hallmark. Dr. Wilson has stock in Delve Bio. The institution of Dr. Wilson has received research support from Genentech / Roche. The institution of Dr. Wilson has received research support from NIH. The institution of Dr. Wilson has received research support from Novartis. The institution of Dr. Wilson has received research support from National Multiple Sclerosis Society. The institution of Dr. Wilson has received research support from Fanconi Anemia Research Foundation. The institution of Dr. Wilson has received research support from Department of Defense. The institution of Dr. Wilson has received research support from Chan Zuckerberg Initiative. The institution of Dr. Wilson has received research support from Kyverna Therapeutics. Dr. Wilson has received intellectual property interests from a discovery or technology relating to health care. Dr. Wilson has received intellectual property interests from a discovery or technology relating to health care. Dr. Wilson has received personal compensation in the range of $10,000-$49,999 for serving as a Expert Witness with US Dept of Justice.
Barney J. Stern, MD, FAAN (Johns Hopkins Outpatient Center) Dr. Stern has received personal compensation in the range of $0-$499 for serving as an officer or member of the Board of Directors for Foundation for Sarcoidosis Research. The institution of Dr. Stern 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 AAN. The institution of Dr. Stern has received research support from NIH/NINDS. The institution of Dr. Stern has received research support from NIH/NINDS. The institution of Dr. Stern has received research support from NIH/NINDS. The institution of Dr. Stern has received research support from NIH/NINDS. Dr. Stern has received publishing royalties from a publication relating to health care.
Jeffrey M. Gelfand, MD, MS, FAAN (University of California, San Francisco) Dr. Gelfand has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Arialys. Dr. Gelfand has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Ventyx Bio. An immediate family member of Dr. Gelfand has received personal compensation in the range of $50,000-$99,999 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for Headache: The Journal of Head and Face Pain. The institution of Dr. Gelfand has received research support from Genentech/Roche. The institution of Dr. Gelfand has received research support from Vigil Neurosciences. An immediate family member of Dr. Gelfand has received publishing royalties from a publication relating to health care. Dr. Gelfand has received publishing royalties from a publication relating to health care. Dr. Gelfand has received publishing royalties from a publication relating to health care. Dr. Gelfand has a non-compensated relationship as a Trial Steering Committee Chairperson and member with Roche / Genentech that is relevant to AAN interests or activities.
Carlos A. Pardo-Villamizar, MD (Johns Hopkins U, Med Dept of Neurology) The institution of Dr. Pardo-Villamizar has received research support from National Institutes of Health. The institution of Dr. Pardo-Villamizar has received research support from Bart McLean Fund for Neuroimmunology Research .