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Abstract Details

Validation of Fox Insight Cohort via Virtual Research Visits
Movement Disorders
P10 - Poster Session 10 (5:30 PM-6:30 PM)
3-003
To describe the results of a remote cross-sectional study examining the validity of self-reported Parkinson’s disease (PD) diagnosis among Fox Insight participants.
Participation in traditional clinical research studies is restricted by disability and geographical location. New research methods are needed to reach a broader population; the Michael J. Fox Foundation for Parkinson’s Research has implemented Fox Insight, a large-scale prospective online clinical research study. Currently, over 40,000 participants have enrolled and the study may offer valuable insights into the natural history of PD; however, self-reported disease state has not yet been validated in this cohort. 
Over approximately eight months, we enrolled 213 Fox Insight participants and completed visits with 203 individuals (165 with self-reported PD and 38 without). Enrollment was stratified by self-reported disease state and disease duration.  Participants completed standard patient- and clinician-reported outcome measures over two virtual visits conducted using web-based videoconferencing software. The most likely diagnosis was determined based on expert clinical assessment.
Agreement between self-reported and clinician-determined PD diagnosis was very good (kappa=0.85, 95% CI 0.76-0.94).  Disagreement occurred in 10/203 cases.  Of the eight cases with self-reported PD, four had an alternative cause of parkinsonism and four did not have parkinsonism. Of the two cases without self-reported PD, both had a clinician-determined diagnosis of PD. The clinician-determined PD cohort (n=159) was 61% male, 95% Caucasian, and had a mean (SD) age of 66.7 (8.9), MDS-UPDRS motor score 23.1 (12.1), Montreal Cognitive Assessment score 25.3 (3.6), and modified Schwab & England 85.2 (12.7). Over 95% were satisfied with the study and were willing to participate in future research studies with virtual visits. 
Self-reported PD diagnosis in Fox Insight is accurate. Virtual visits can expand the clinical characterization of participants in online clinical research studies and interest in participating in studies with virtual visits is high.
Authors/Disclosures
Ruth Schneider, MD, FÂ鶹´«Ã½Ó³»­ (University of Rochester)
PRESENTER 		Dr. Schneider has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Escape Bio. The institution of Dr. Schneider has received research support from The Michael J. Fox Foundation. The institution of Dr. Schneider has received research support from NIH. The institution of Dr. Schneider has received research support from Acadia Pharmaceuticals. The institution of Dr. Schneider has received research support from CHDI. The institution of Dr. Schneider has received research support from Biohaven Pharmaceuticals. The institution of Dr. Schneider has received research support from Parkinson Study Group. The institution of Dr. Schneider has received research support from The Michael J. Fox Foundation. The institution of Dr. Schneider has received research support from Bial. Dr. Schneider has received personal compensation in the range of $500-$4,999 for serving as a Telemedicine Evaluator with Parkinson's Foundation.
No disclosure on file
No disclosure on file
Christopher Tarolli, MD, FÂ鶹´«Ã½Ó³»­ (University of Rochester) Dr. Tarolli has received personal compensation for serving as an employee of University of Rochester. The institution of Dr. Tarolli has received research support from National Institutes of Health. The institution of Dr. Tarolli has received research support from Biogen. The institution of Dr. Tarolli has received research support from Neuron23. Dr. Tarolli has received personal compensation in the range of $500-$4,999 for serving as a Speaker, Committee Member with Â鶹´«Ã½Ó³»­. Dr. Tarolli has received personal compensation in the range of $500-$4,999 for serving as a Committee member with National Board of Medical Examiners. Dr. Tarolli has a non-compensated relationship as a Committee Member with Â鶹´«Ã½Ó³»­ that is relevant to Â鶹´«Ã½Ó³»­ interests or activities.
Jamie L. Adams, MD (University of Rochester Medical Center) Dr. Adams has received personal compensation in the range of $500-$4,999 for serving as a Consultant for AbbVie. Dr. Adams has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Michael J. Fox Foundation. Dr. Adams has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for BioSensics. The institution of Dr. Adams has received research support from NIH/NINDS. The institution of Dr. Adams has received research support from Biogen. The institution of Dr. Adams has received research support from The Michael J. Fox Foundation. The institution of Dr. Adams has received research support from Critical Path Institute. Dr. Adams has received personal compensation in the range of $500-$4,999 for serving as a KINECT-HD Steering Committee Member with Huntington Study Group. Dr. Adams has received personal compensation in the range of $500-$4,999 for serving as a ORCHESTRA-PD Steering Committee Member with Parkinson Study Group.
Richard L. Barbano, MD, PhD, FÂ鶹´«Ã½Ó³»­ Dr. Barbano has received personal compensation for serving as an employee of State of New York/Office of Mental Health. Dr. Barbano has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Abbvie/Allergan. Dr. Barbano has received personal compensation in the range of $500-$4,999 for serving as a Consultant for 2nd MD. Dr. Barbano has received personal compensation in the range of $10,000-$49,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Allergan/Abbvie. Dr. Barbano has received personal compensation in the range of $0-$499 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for Visual Dx. Dr. Barbano has received personal compensation in the range of $100,000-$499,999 for serving as an Expert Witness for R L Barbano, MD,PhD, PLLC. The institution of Dr. Barbano has received research support from Fox Foundation. The institution of Dr. Barbano has received research support from Dystonia Study Coalition. The institution of Dr. Barbano has received research support from Revance. Dr. Barbano has received intellectual property interests from a discovery or technology relating to health care.
No disclosure on file
No disclosure on file
Peggy Auinger (University of Rochester) Ms. Auinger has nothing to disclose.
No disclosure on file
E. Ray Dorsey, MD, MBA (University of Rochester) Dr. Dorsey has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Seelos Therapeutics. Dr. Dorsey has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Eden McCallum, LLP. Dr. Dorsey has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Genentech/Roche. Dr. Dorsey has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Biohaven Pharmaceuticals. Dr. Dorsey has received personal compensation in the range of $500-$4,999 for serving as a Consultant for WebMD. Dr. Dorsey has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for BioSensics. Dr. Dorsey has received personal compensation in the range of $50,000-$99,999 for serving as a Consultant for Mediflix. Dr. Dorsey has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Cerevance. Dr. Dorsey has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Kairos Cinema, LLC. Dr. Dorsey has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Mitsubishi Tanabe Pharma America Inc.. Dr. Dorsey has received personal compensation in the range of $500-$4,999 for serving as a Consultant for HanAll. Dr. Dorsey has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Novartis. Dr. Dorsey has received personal compensation in the range of $10,000-$49,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Sanofi. Dr. Dorsey has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Advarra. Dr. Dorsey has received personal compensation in the range of $10,000-$49,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Medrhythms. Dr. Dorsey has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for ANA. Dr. Dorsey has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for HMP Â鶹´«Ã½Ó³»­, LLP. Dr. Dorsey has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for ADIVO Associates France. Dr. Dorsey has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for University of Toronto. Dr. Dorsey has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for Philadelphia Neurological Society. Dr. Dorsey has stock in Included Health. Dr. Dorsey has stock in Mediflix. Dr. Dorsey has stock in SemCap. Dr. Dorsey has stock in Synapticure. The institution of Dr. Dorsey has received research support from NIH/NINDS. The institution of Dr. Dorsey has received research support from Burroughs Wellcome . The institution of Dr. Dorsey has received research support from Michael J. Fox Foundation - Fox Insight. The institution of Dr. Dorsey has received research support from Michael J. Fox Foundation - Emerald. The institution of Dr. Dorsey has received research support from B. Thomas Golisano Foundation. The institution of Dr. Dorsey has received research support from Emerald Innovations, Inc.. The institution of Dr. Dorsey has received research support from Photopharmics Inc.. The institution of Dr. Dorsey has received research support from Averitas Pharma Inc.. The institution of Dr. Dorsey has received research support from DOD/Army Medical Research Acquisition Activity. The institution of Dr. Dorsey has received research support from NIH/NINDS.
Connie C. Marras, MD (Toronto Western Hospital) Dr. Marras has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Neurocrine Biosciences. The institution of Dr. Marras has received research support from Theravance Inc. The institution of Dr. Marras has received research support from Centogene.
Caroline M. Tanner, MD, PhD, FÂ鶹´«Ã½Ó³»­ (University of California San Francisco, Weill Institute for Neurosciences) Dr. Tanner has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Evidera. Dr. Tanner has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Neurocrine. Dr. Tanner has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Jazz Pharmaceuticals/Cavion. Dr. Tanner has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Bial . Dr. Tanner has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Supernus. Dr. Tanner has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Roche Genentech. The institution of Dr. Tanner has received research support from Gateway LLC. The institution of Dr. Tanner has received research support from Roche\Genentech. The institution of Dr. Tanner has received research support from Michael J Fox Foundation . The institution of Dr. Tanner has received research support from National Institute of Health . The institution of Dr. Tanner has received research support from Department of Defense. Dr. Tanner has received personal compensation in the range of $500-$4,999 for serving as a Faculty, CME presentation with Medscape /WebND.