Project Summary

Background: Dynamic collaborations between stakeholders from a broad range of disciplines are the necessary first steps when formulating hypotheses, framing study design, and building translational approaches to mental health research. Forming these collaborations can pose significant challenges that require strategic scaffolding to integrate the knowledge and perspectives not only from multiple scientific silos, but also from the populations impacted by mental health conditions. A diverse range of perspectives is necessary for co-producing research related to heterogeneous condition like autism.

Proposed Solution to the Problem: Local patient advocacy groups initiated several grassroots efforts to address these gaps, including organizing two autism summits for parents. While the summits had remarkable impact on increasing awareness about autism, they did not have a means to broadly engage clinicians and researchers. Two recent regional multidisciplinary activities—the PCORI-funded AutGO initiative led by the PL (an integrated framework to promote building a conceptual connection between genetics research and outcomes research) and the BioNexus KC-sponsored Collaborate2Cure (C2C) autism seminars—have created an unprecedented opportunity to re-engage these patient advocacy efforts with the goal of  co-developing and co-producing PCOR/CER projects to address unmet needs of individuals with autism. The proposed MARC consortium will provide a platform to establish this community partnership by bridging these disconnected efforts.

Objectives: The long-term goal is to form a consortium called the Midwest Patient-Centered Autism Research Consortium (MARC), by leveraging the existing but disconnected strong parent advocacy efforts, PCORI engagement protocol (AutGO), community-initiated multidisciplinary collaborative forum (C2C), and unique clinical/research/technology resources in the region, to promote autism research projects focused on outcomes that matter most to patients and families.

  • Form the consortium advisory board (MARC-AB)
  • Develop a comprehensive engagement model and governance structure
  • Develop MARC mission statement and a patient-centered autism research agenda
  • Form MARC strategic planning cores
  • Organize a regional autism summit
  • Develop a platform for long-term sustainability

Activities: Establishing Partnership. The project team will expand prior partnerships with Midwest autism researchers, clinicians, advocates, and industry representatives. Conducting Community Mapping. The knowledge gained from such assessments will guide the future direction of MARC, particularly in mobilizing stakeholders and developing PCOR/CER in autism. Organizing an Autism Summit. The convening will help engage the extended community in developing the regional autism research vision and identifying areas of interest/barriers/opportunities for the future direction of MARC.

Projected Outcomes and Outputs:  Establishing the proposed multi-stakeholder partnership will facilitate a sustainable capacity to direct the growing regional interest toward autism PCOR/CER. This project would also serve as a model for establishing similar regional collaborations, to facilitate, develop, and conduct PCOR/CER in other conditions including intellectual and/or developmental disabilities. Project deliverables will include a series of educational modules, community mapping report, and MARC capacity-building roadmap.

Patient and Stakeholder Engagement Plan: Patients/stakeholders have been actively engaged in all three supporting activities (AutGO, C2C, and patient advocacy groups) and contributed to the workplan preparation. They will remain involved in co-production of the MARC project by presenting at the autism summit, guiding project development, co-facilitating the development of the MARC mission statement and research agenda, and contributing to community mapping.

Project Collaborators: Project collaborators include the Children’s Mercy Research Institute, University of Kansas, University of Kansas Medical Center, Creighton University, and patient/community stakeholders.

Project Information

Zohreh Talebizadeh, PhD
American College of Medical Genetics and Genomics

Key Dates

June 2023


Project Status
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Last updated: April 12, 2024