title: At the cross-roads of participatory research and biomarker discovery in autism: the need for empirical data.
abstract: BACKGROUND
  Identifying biomarkers for autism can improve outcomes for those affected by autism. Engaging the diverse stakeholders in the research process using community-based participatory research (CBPR) can accelerate biomarker discovery into clinical applications. However, there are limited examples of stakeholder involvement in autism research, possibly due to conceptual and practical concerns. We evaluate the applicability of CBPR principles to biomarker discovery in autism and critically review empirical studies adopting these principles.
  
  
  METHODS
  Using a scoping review methodology, we identified and evaluated seven studies using CBPR principles in biomarker discovery.
  
  
  CONCLUSIONS
  The limited number of studies in biomarker discovery adopting CBPR principles coupled with their methodological limitations suggests that such applications are feasible but challenging. These studies illustrate three CBPR themes: community assessment, setting global priorities, and collaboration in research design. We propose that further research using participatory principles would be useful in accelerating the pace of discovery and the development of clinically meaningful biomarkers. For this goal to be successful we advocate for increased attention to previously identified conceptual and methodological challenges to participatory approaches in health research, including improving scientific rigor and developing long-term partnerships among stakeholders.
authors.affiliation: Department of Psychiatry, McGill University, Ludmer Research & Training Building, 1033 Pine Avenue West, Montreal, QC, H3A 1A1, Canada. Afiqah.yusuf@mail.mcgill.ca.
authors.forename: Afiqah
authors.initials: A
authors.lastname: Yusuf
authors.affiliation: Department of Psychiatry, McGill University, Ludmer Research & Training Building, 1033 Pine Avenue West, Montreal, QC, H3A 1A1, Canada. mayada.elsabbagh@mcgill.ca.
authors.forename: Mayada
authors.initials: M
authors.lastname: Elsabbagh
mesh_terms: D001321:Autistic Disorder / Q000175:diagnosis; D015415:Biomarkers; D035843:Biomedical Research / Q000941:ethics*; D055812:Community-Based Participatory Research / Q000941:ethics*; D003159:Community-Institutional Relations; D003299:Cooperative Behavior; D036262:Empirical Research; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D055818:Public-Private Sector Partnerships
chemical_list: D015415:Biomarkers