Abstract Details

Title Consensus Recommendations for the Management of Neurosarcoidosis: A Delphi Survey of Experts Across the US

Topic Autoimmune Neurology

Presentation(s) P2 - Poster Session 2 (2:45 PM-3:45 PM)

Poster/Presentation
Number 032

Objective

To develop consensus guidelines on the management of neurosarcoidosis via a Delphi survey of expert clinicians across the US.

Background

Neurosarcoidosis is a rare granulomatous disorder of the nervous system. Expert-consensus diagnostic criteria by the Neurosarcoidosis Consortium Consensus Group provided a framework for diagnosis, but at present there are no guidelines on treatment and surveillance of treatment response in neurosarcoidosis.

Design/Methods

Anonymous, Delphi-style surveys of experts were distributed via RedCap. We collected data on the providers’ backgrounds and experience in neurosarcoidosis, and queried respondents on their approach to treatment in general and to specific neurosarcoidosis phenotypes. Consensus was defined as >80% agreement among respondents.

Results

Of 41 invited experts, 32 participated in Survey 1 and 24/32 in Survey 2. All except one were neuroimmunologists. Consensus was reached on the following key questions: initial treatment depends on neurosarcoidosis phenotype and severity; a uniform stepwise escalation approach is not recommended for all phenotypes; glucocorticoids should be administered as part of the initial treatment of neurosarcoidosis regardless of phenotype; active, systemic sarcoidosis should be considered when making treatment decisions; following clinical remission, attempt to wean glucocorticosteroid within the first year of treatment is reasonable; MRI with contrast should be part of treatment response surveillance. Additional consensus recommendations will be presented.

Conclusions

Expert consensus can guide practicing clinicians in providing care to those with neurosarcoidosis. Using the Delphi approach, we were able to achieve consensus recommendations for management that could be useful to clinicians in their daily practice. The key recommendation that treatment with higher-efficacy agent should be considered for certain severe phenotypes early on represents a conceptual shift from the traditional ‘escalation’ approach that required patients to fail one or more agents before trying a higher-efficacy drug.

Authors/Disclosures
Giovanna Manzano, MD PRESENTER	Dr. Manzano has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Gilead Sciences. Dr. Manzano has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for InfuCare Rx.
James E. Eaton III, MD (Vanderbilt University)	Dr. Eaton has received personal compensation in the range of $0-$499 for serving as a Consultant for Uniqure. Dr. Eaton has received personal compensation in the range of $500-$4,999 for serving as an Expert Witness for Law Practices. Dr. Eaton has received personal compensation in the range of $0-$499 for serving as a Speaker with Can Do MS.
Michael Levy, MD, PhD, FAAN (Massachusetts General Hospital/Harvard Medical School)	Dr. Levy has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Mitsubishi Pharma. Dr. Levy has received personal compensation in the range of $500-$4,999 for serving as a Consultant for UCB Pharma. Dr. Levy has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Sanofi. Dr. Levy 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. Dr. Levy has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Horizon. Dr. Levy has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Genentech. Dr. Levy has received personal compensation in the range of $500-$4,999 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for Elsevier. Dr. Levy has received personal compensation in the range of $10,000-$49,999 for serving as an Expert Witness for Various law firms. The institution of Dr. Levy has received research support from National Institutes Health.
Justin Abbatemarco, MD	Dr. Abbatemarco 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. Dr. Abbatemarco has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Horizon. Dr. Abbatemarco has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Genentech . Dr. Abbatemarco has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for TG Therapeutics, Inc.. Dr. Abbatemarco has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Amgen. The institution of Dr. Abbatemarco has received research support from Amgen.
Allen J. Aksamit, Jr., MD, FAAN (Mayo Clinic)	Dr. Aksamit has nothing to disclose.
Pria Anand, MD (Boston University School of Medicine)	Dr. Anand has nothing to disclose.
Denis T. Balaban, MD (Massachusetts General Hospital)	Dr. Balaban has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Infucare. The institution of Dr. Balaban has received research support from ArgenX.
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 ��ɫ��.
Robert Baughman	No disclosure on file
Shamik Bhattacharyya, MD, FAAN (Brigham and Women's Hospital)	Dr. Bhattacharyya has received personal compensation in the range of $500-$4,999 for serving as a Consultant for NeuroLambda. Dr. Bhattacharyya 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 Pharmaceuticals. Dr. Bhattacharyya 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. Bhattacharyya 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. Bhattacharyya 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 Continuum. Dr. Bhattacharyya 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 Wiley. Dr. Bhattacharyya has received personal compensation in the range of $10,000-$49,999 for serving as an Expert Witness for Merck. The institution of Dr. Bhattacharyya has received research support from Alexion Pharmaceuticals. The institution of Dr. Bhattacharyya has received research support from National Institute of Health. The institution of Dr. Bhattacharyya has received research support from UCB. The institution of Dr. Bhattacharyya has received research support from Genentech. Dr. Bhattacharyya has received publishing royalties from a publication relating to health care. Dr. Bhattacharyya has received publishing royalties from a publication relating to health care.
Roberto Bomprezzi, MD, FAAN (University of Massachusetts, Dept. of Neurology)	Dr. Bomprezzi has nothing to disclose.
Tracey Cho, MD, FAAN	Dr. Cho has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Kyverna. Dr. Cho has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Delve Bio. Dr. Cho has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for NIH. The institution of an immediate family member of Dr. Cho has received research support from NIH. Dr. Cho has received publishing royalties from a publication relating to health care.
Bart Chwalisz, MD (Massachusetts General Hospital, Department of Neurology)	Dr. Chwalisz has nothing to disclose.
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.
David B. Clifford, MD, FAAN (Washington University School of Med)	Dr. Clifford has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Excision BioTherapeutics. Dr. Clifford has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Seagen. Dr. Clifford has received personal compensation in the range of $500-$4,999 for serving as a Consultant for CellEvolve. Dr. Clifford has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Wave Life Sciences. Dr. Clifford 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. Clifford has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Atara Biotherapeuitics. Dr. Clifford has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Teva. Dr. Clifford has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Roche. Dr. Clifford has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Avidity (Medpace). Dr. Clifford has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Pfizer. Dr. Clifford has received publishing royalties from a publication relating to health care.
Eoin P. Flanagan, MBBCh, FAAN (Mayo Clinic)	The institution of Dr. Flanagan has received personal compensation in the range of $10,000-$49,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Roche. Dr. Flanagan has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for Pharmacy times. The institution of Dr. Flanagan has received personal compensation in the range of $5,000-$9,999 for serving on a Speakers Bureau for UCB. The institution of Dr. Flanagan has received research support from UCB. The institution of Dr. Flanagan has received research support from Roche. The institution of Dr. Flanagan has received research support from UCB. The institution of Dr. Flanagan has received research support from Merck. The institution of Dr. Flanagan has received research support from Roche. Dr. Flanagan has received publishing royalties from a publication relating to health care. Dr. Flanagan has received publishing royalties from a publication relating to health care. Dr. Flanagan has a non-compensated relationship as a Member of medical Advisory Board with The MOG Project that is relevant to AAN interests or activities. Dr. Flanagan has a non-compensated relationship as a Editorial board member with Journal of The Neurologic Sciences that is relevant to AAN interests or activities. Dr. Flanagan has a non-compensated relationship as a Editorial board member with Neuroimmunology Reports that is relevant to AAN interests or activities. Dr. Flanagan has a non-compensated relationship as a Editorial Board Member with Neurology, Neuroimmunology Neuroinflammation (N2) Journal that is relevant to AAN interests or activities. Dr. Flanagan has a non-compensated relationship as a Editorial Board Member with Neurology that is relevant to AAN interests or activities.
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.
George K. Harrold, MD (Brigham and Women's Hospital)	Dr. Harrold has nothing to disclose.
Spencer Hutto, MD (Emory University: Neurology Residency Program)	Dr. Hutto has nothing to disclose.
Siddharama Pawate, MD (Vanderbilt University Medical Center)	The institution of Dr. Pawate has received research support from Genentech. The institution of Dr. Pawate has received research support from Biogen.
Noellie M. Rivera-Torres, MD (Dr Noellie Rivera-Torres)	Dr. Rivera-Torres has nothing to disclose.
Lama Abdel Wahed, MD (University of Iowa, Neurology)	Dr. Abdel Wahed has received personal compensation in the range of $0-$499 for serving as a Resident Honorary Speaker with Iowa Neurological Association. Dr. Abdel Wahed has received personal compensation in the range of $0-$499 for serving as a Author with MedLink. Dr. Abdel Wahed has received personal compensation in the range of $500-$4,999 for serving as a Author with AAN Continuum. Dr. Abdel Wahed has received personal compensation in the range of $0-$499 for serving as a Invited grand round speaker with University of Maryland.
Steven R. Dunham, Jr., MD	Dr. Dunham has nothing to disclose.
Rajesh K. Gupta, MBBS (UTHealth)	Dr. Gupta has nothing to disclose.
Brandon P. Moss, MD (Cleveland Clinic Mellen Center)	An immediate family member of Dr. Moss has stock in Pfizer. The institution of Dr. Moss has received research support from Novartis. The institution of Dr. Moss has received research support from Genentech.
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 .
Rohini D. Samudralwar, MD (The University of Pennsylvania)	Dr. Samudralwar has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for EMD Serono. Dr. Samudralwar 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. Samudralwar 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. Samudralwar has received personal compensation in the range of $500-$4,999 for serving as a Speaker with Multiple Sclerosis Association of America.
Nagagopal Venna, MBBS, FAAN (Massachusetts General Hospital)	Dr. Venna has nothing to disclose.
Aram Zabeti, MD (University of Cincinnati/Dept of Neurology)	Dr. Zabeti has received personal compensation in the range of $10,000-$49,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Alexion. Dr. Zabeti has received personal compensation in the range of $10,000-$49,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Genentech. Dr. Zabeti has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Octave. Dr. Zabeti has received personal compensation in the range of $10,000-$49,999 for serving on a Speakers Bureau for Alexion. Dr. Zabeti has received personal compensation in the range of $100,000-$499,999 for serving on a Speakers Bureau for Biogen. Dr. Zabeti has received personal compensation in the range of $10,000-$49,999 for serving on a Speakers Bureau for EMD-Serono. Dr. Zabeti has received personal compensation in the range of $10,000-$49,999 for serving on a Speakers Bureau for Genentech. Dr. Zabeti has received personal compensation in the range of $10,000-$49,999 for serving on a Speakers Bureau for Sanofi-Genzyme. Dr. Zabeti has received personal compensation in the range of $50,000-$99,999 for serving on a Speakers Bureau for Horizon. Dr. Zabeti has received personal compensation in the range of $10,000-$49,999 for serving on a Speakers Bureau for Janssen . Dr. Zabeti has received personal compensation in the range of $10,000-$49,999 for serving on a Speakers Bureau for BMS. Dr. Zabeti has received personal compensation in the range of $10,000-$49,999 for serving on a Speakers Bureau for TG.
Ilya Kister, MD, FAAN (NYU School of Medicine)	Dr. Kister has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Genentech-Roche. Dr. Kister has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Horizon. The institution of Dr. Kister has received research support from Genentech. The institution of Dr. Kister has received research support from Novartis. Dr. Kister has received publishing royalties from a publication relating to health care.

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