title: Perspectives on neurological patient registries: a literature review and focus group study.
abstract: BACKGROUND
  Patient registries represent a well-established methodology for prospective data collection with a wide array of applications for clinical research and health care administration. An examination and synthesis of registry stakeholder perspectives has not been previously reported in the literature.
  
  
  METHODS
  To inform the development of future neurological registries we examined stakeholder perspectives about such registries through a literature review followed by 3 focus groups comprised of a total of 15 neurological patients and 12 caregivers.
  
  
  RESULTS
  (1) LITERATURE REVIEW: We identified 6,435 abstracts after duplicates were removed. Of these, 410 articles underwent full text review with 24 deemed relevant to perspectives about neurological and non-neurological registries and were included in the final synthesis. From a patient perspective the literature supports altruism, responsible use of data and advancement of research, among others, as motivating factors for participating in a patient registry. Barriers to participation included concerns about privacy and participant burden (i.e. extra clinic visits and associated costs). (2) Focus groups: The focus groups identified factors that would encourage participation such as: having a clear purpose; low participant burden; and being well-managed among others.
  
  
  CONCLUSIONS
  We report the first examination and synthesis of stakeholder perspectives on registries broadly with a specific focus on neurological patient registries. The findings of the broad literature review were congruent with the neurological patient and caregiver focus groups. We report common themes across the literature and the focus groups performed. Stakeholder perspectives need to be considered when designing and operating patient registries. Emphasizing factors that promote participation and mitigating barriers may enhance patient recruitment.
authors.affiliation: Department of Clinical Neurosciences and Hotchkiss Brain Institute, University of Calgary, Clinical Neurosciences, South Health Campus, 4448 Front Street SE, Calgary, Alberta T3M 1M4, Canada. korngut@gmail.com.
authors.forename: Lawrence
authors.initials: L
authors.lastname: Korngut
authors.forename: Gail
authors.initials: G
authors.lastname: MacKean
authors.forename: Lisa
authors.initials: L
authors.lastname: Casselman
authors.forename: Megan
authors.initials: M
authors.lastname: Johnston
authors.forename: Lundy
authors.initials: L
authors.lastname: Day
authors.forename: Darren
authors.initials: D
authors.lastname: Lam
authors.forename: Diane
authors.initials: D
authors.lastname: Lorenzetti
authors.forename: Janet
authors.initials: J
authors.lastname: Warner
authors.forename: Nathalie
authors.initials: N
authors.lastname: Jetté
authors.forename: Tamara
authors.initials: T
authors.lastname: Pringsheim
mesh_terms: D017144:Focus Groups; D006301:Health Services Needs and Demand; D006801:Humans; D009422:Nervous System Diseases / Q000453:epidemiology / Q000628:therapy*; D010358:Patient Participation; D012042:Registries