title: Patient Engagement in Neurological Clinical Trials Design: A Conference Summary.
abstract: OBJECTIVE
  The conference objectives included educating patients and advocates about clinical trials, educating the clinical research community about patient perspectives on participating in clinical trial design, and identifying strategies to increase participation in clinical trial design for neurological disorders.
  
  
  METHODS
  Observations were noted during a 1-day conference attended by patients, patient advocates, clinical trial staff, and investigators. The conference offered didactic sessions, small, and large group discussions.
  
  
  METHODS
  Conference participants were patients, patient advocates, clinical trial staff, students, and investigators interested in engaging patients in clinical trial design for neurological disorders.
  
  
  METHODS
  Conference participants were asked to consider lessons learned that could increase patient engagement in clinical trial design.
  
  
  RESULTS
  We found that there is growing interest in including patients in the design of clinical trials for neurological disorders. Several themes emerged on how to move forward: networking; the multifaceted roles of advocates in research; training and education; creating patient-researcher partnerships; and clinical trials regulation issues.
  
  
  CONCLUSIONS
  The conference provided a forum for dialogue regarding stakeholder engagement in the design of clinical trials for neurological disorders. This experience provides a template for replication and dissemination of this conference and informs next steps to accelerate the pathway from dialogue to action.
authors.affiliation: Department of Veterans Affairs, VA Center for Clinical Management Research, Ann Arbor VA Healthcare System, Ann Arbor, Michigan, USA.|Department of Emergency Medicine, University of Michigan, Ann Arbor, Michigan, USA.
authors.forename: Enesha M
authors.initials: EM
authors.lastname: Cobb
authors.affiliation: Department of Emergency Medicine, University of Michigan, Ann Arbor, Michigan, USA.|Department of Neurology, University of Michigan, Ann Arbor, Michigan, USA.
authors.forename: William
authors.initials: W
authors.lastname: Meurer
authors.affiliation: Department of Emergency Medicine, University of Michigan, Ann Arbor, Michigan, USA.
authors.forename: Deneil
authors.initials: D
authors.lastname: Harney
authors.affiliation: Department of Emergency Medicine, University of Michigan, Ann Arbor, Michigan, USA.
authors.forename: Robert
authors.initials: R
authors.lastname: Silbergleit
authors.affiliation: Clinical Trials Transformation Initiative, Duke University, Durham, North Carolina, USA.
authors.forename: Bray Patrick
authors.initials: BP
authors.lastname: Lake
authors.affiliation: Foundation for Interdisciplinary Motor Neuron Medicine, Metamora, Michigan, USA.
authors.forename: Christina
authors.initials: C
authors.lastname: Clark
authors.affiliation: Department of Pediatrics, University of Michigan, Ann Arbor, Michigan, USA.
authors.forename: Debbie
authors.initials: D
authors.lastname: Gipson
authors.affiliation: Department of Emergency Medicine, University of Michigan, Ann Arbor, Michigan, USA.
authors.forename: William
authors.initials: W
authors.lastname: Barsan
mesh_terms: D035843:Biomedical Research; D002986:Clinical Trials as Topic; D003226:Congresses as Topic; D006801:Humans; D009422:Nervous System Diseases / Q000628:therapy; D009462:Neurology / Q000379:methods* / Q000592:standards; D010344:Patient Advocacy; D010358:Patient Participation; D012107:Research Design; D013334:Students; D057170:Translational Research, Biomedical / Q000458:organization & administration*
keywords: clinical trials; clinical trials design; neurologic disorders; patient engagement; stakeholders