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Patient Engagement and Co-creation of Rare Disease Research: Lessons from the Global Moyamoya Patient Registry

Author:Houle, Dean   Kocher, Sophia   Houle, Roxanne   Stratton, Catherine   

Session Name:P12: Cerebrovascular Disease and Interventional Neurology: Global Health, Community, and Patient-centered Care  

Topic:Cerebrovascular Disease and Interventional Neurology  

Program Number:P12.013  

Author Institution:Dalla Lana School of Public Health, Toronto, ON, Canada  

Patient Experience Scores for Telehealth Visits at a Child Neurology Clinic: A Retrospective Cohort Study

Author:Kumar, Gogi   Fonseca, Laura   Yozawitz, Elissa   Joshi, Charuta   Skora, Clare   Joshi, Sucheta   Zecavati, Nassim   Ng, Elizabeth   

Session Name:P1: Practice, Policy, and Ethics 1  

Topic:Practice, Policy, and Ethics  

Program Number:P1.010  

Author Institution:Dayton Children's Hospital, Dayton, OH  Connecticut Children's Medical Center, Farmington, CT  

Patient Experiences Initiating Continuous Subcutaneous Apomorphine Infusion (CSAI): An Interview-based Survey of InfusON Study Participants

Author:Agarwal, Pinky   Crouse, Nikkilina   Breiteneicher, Arianne   Grall, Mindy   

Session Name:P11: Movement Disorders: Therapeutics in Study for Parkinson's Disease  

Topic:Movement Disorders  

Program Number:P11.029  

Author Institution:Evergreen Health, Kirkland, WA  Supernus Pharmaceuticals, Inc, Rockville, MD  Supernus Pharmaceuticals, Chicago, IL  

Patient Perspectives on Barriers to Diagnosis and Treatment of Tardive Dyskinesia from a Cross-sectional Survey

Author:Solis, Gianni   Chaijale, Nayla   Gonzalez, Alma   Zhang, Di   Ahn, Sung-Woo   Luo, Weixiu   Overbaugh, Melissa   Suett, Mark   Tian, Marc   Ramirez-Campos, Verena   Kumar, Rajeev   

Session Name:P4: Movement Disorders: Care Models and Patient Perceptions in Movement Disorders  

Topic:Movement Disorders  

Program Number:P4.018  

Author Institution:Rocky Mountain Movement Disorders Center, Englewood, CO  Teva Branded Pharmaceutical Products R&D, Inc., West Chester, PA  KMK Consulting, Inc., Morristown, NJ  Research Catalyst, LLC., Englewood, CO  Teva UK Limited, Global Medical Affairs, Harlow, United Kingdom  Teva Pharmaceutical Industries Ltd., IVAX, Buenos Aires, Argentina  

Patient Preferences for Treatment Features in Neuromyelitis Optica Spectrum Disorder (NMOSD): Results From a Discrete Choice Experiment (DCE)

Author:Abbatemarco, Justin   Yu, Jeffrey   Kleman, Martin   Myers, Kelley   Poulos, Christine   Conway, Devon   

Session Name:P7: Autoimmune Neurology: NMOSD and MOGAD 1  

Topic:Autoimmune Neurology  

Program Number:P7.013  

Author Institution:Cleveland Clinic, Cleveland, OH  Alexion, AstraZeneca Rare Disease, Boston, MA  RTI Health Solutions, Research Triangle Park, NC