Zohreh Talebizadeh, PhD, Developmental and Behavioral Sciences, was recently awarded a 2-year, $250,000 Eugene Washington PCORI Engagement Award from the Patient-Centered outcomes Research Institute (PCORI).
Dr. Talebizadeh’s project, “Midwest Patient-Centered Autism Research Consortium (MARC)”, aims to develop a community-based research consortium with the goal of promoting autism research projects focused on outcomes that matter most to patients and families.
“Understanding the mechanisms underlying variable expressivity of core behavioral symptoms, responsiveness to particular treatments, and non-behavioral problems in autism is a critical step toward informing personalized approaches to treatment. To reach this tall goal in genetics, which is a key component of translational research, holistic approaches that incorporate perspectives of diverse stakeholders, including patients, need to be considered,” she wrote.
To address this critical need, she has launched a unique initiative called Autism Genetics Outcomes (AutGO). Because gene-environment interaction studies may carry a great potential to identify findings that could improve patient health, they would benefit from patient engagement and utilizing the AutGO model. AutGO will serve as the conceptual and engagement model to guide establishing partnership in MARC.
“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.”
“Patient advocates have long voiced concerns over the need to improve translational aspects of genetics research studies and to engage community members in the research process. Researchers have also noted a paucity of translational research in the genetics field,” she wrote. “Our vision for MARC is to invite and engage all stakeholders interested to contribute to developing patient-centered autism research.”
The Eugene Washington PCORI Engagement Awards support projects that encourage active, meaningful involvement of patients, caregivers, clinicians, and other healthcare stakeholders as integral members of the patient-centered outcomes research/comparative clinical effectiveness research (PCOR/CER) enterprise.