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CP-NET Stakeholder Advisory Group

What it is? Who are the members? What does the group do? How to get involved?

CP-NET has developed the CP-NET Stakeholder Advisory Group to support CP-NET research priorities and help to lead future directions in CP Research.

Overarching Goal: to provide a link between CP-NET researchers and stakeholders to facilitate bi-directional communication around CP-NET activities

Stakeholder Membership include: (List may not be exhaustive)

  • Individuals with CP
  • Parents/Family of persons with CP
  • Federation for Cerebral Palsy (OFCP)
  • Ontario Association of Children’s Rehabilitation Services (OACRS)
  • Holland Bloorview Kids Rehabilitation Hospital
  • CanChild Centre for Childhood Disability Research

Stakeholder Group Activities include: (in no implied order of importance)

  • Reviewing materials for CP-NET website (including website content, resources, ensuring readability of study results before dissemination to a wide audience)
  • As research findings evolve, help to advise on communication strategies to facilitate meaningful Knowledge Translation to wider stakeholder group across province
  • Periodically provide a stakeholder (i.e., parent/family perspective) on CP-NET activities (e.g., co-present at meetings with CP-NET team, media interviews, etc)
  • Assist in developing ongoing and future research directions by communicating research priorities from stakeholders’ perspectives. Activities may include meeting with researchers about possible research questions, reviewing grant proposals, etc.
  • Acting as formal ‘Knowledge Users’ in grant applications by CP-NET scientists.
  • Provide suggestions from stakeholders’ perspectives on topics that require credible information or research
  • Promote CP-NET, CP-NET activities and research projects (including opportunities for people to engage in research), and the CP-NET website, within stakeholders’ own networks (e.g., via blogs, websites, groups, peers, etc.). This will help to raise awareness of CP-NET initiatives in an effort to assist in recruitment for research studies and for uptake of credible information from CP-NET Website
  • Help to plan an annual CP-NET Family Forum

CP-NET’s Potential Contributions to the Stakeholder Group

  • Develop and maintain a CP-NET Website accessible to everyone interested:
  • Provide overview summaries of research team/investigators, research project activity, and research findings including lay summaries of manuscripts and Knowledge Translation products developed from the research projects
  • Provide evidence-informed resources
  • Maintain a section for recruitment to current research studies, and inform people about how they can get involved in the research and in the Stakeholder Group
  • - Provide a mechanism for families to pose CP-related questions and converse with other families who have a child with CP
  • Provide links to other trustworthy websites and resources, and become a resource hub of credible information
  • Host & support an annual CP Education/Family Form
  • Host & support regular stakeholder group meetings and forums

Time commitment:

  • Four meetings a year – utilizing on-site meetings, video-conference, and teleconference capabilities
  • Ad-hoc planning meetings for annual CP Family Forum (on a volunteer basis)
  • Ad-hoc requests for review of materials (on a volunteer basis)
  • Ad-hoc requests for meetings, media requests, etc (on a volunteer basis)

If you are interested in getting involved in the CP-NET stakeholder group, please contact

Dayle McCauley -