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Updated: Feb 13, 2026
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Using the Visual World Paradigm to Study Sentence Comprehension in Mandarin-Speaking Children with Autism
Published on: October 3, 2018
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Building a Bridge Between Genetics and Outcomes Research: Application in Autism (The AutGO Study)
Zohreh Talebizadeh1,2, Ayten Shah3,
1Children's Mercy Hospital, 2401 Gillham Road, Kansas City, MO, 64108, USA. ztalebi@cmh.edu.
The Patient
|March 7, 2018
Summary
This study highlights the importance of patient engagement in genetics research. It outlines strategies to improve the translational aspects of genetics research by fostering collaboration between researchers and the community.
Area of Science:
- Genetics Research
- Translational Science
- Community Engagement
Background:
- Growing concerns exist regarding the translational effectiveness of genetics research and the need for community involvement.
- Patient advocacy groups and organizations like the Patient-Centered Outcomes Research Institute are driving a cultural shift towards patient-driven research.
Purpose of the Study:
- To initiate a discussion on linking genetics and outcomes research through the Autism Genetics and Outcomes (AutGO) project.
- To establish stakeholder partnerships, identify barriers and facilitators for patient-centered genetics research, and define actions to incorporate patient perspectives.
Main Methods:
- Formed a 33-member community advisory board with diverse stakeholders.
- Conducted six sessions over 12 months using online presentations, surveys, and group discussions.
- Analyzed feedback using content analysis to identify themes related to partnership, barriers, facilitators, and needs.
Main Results:
- Successfully established a partnership with a wide range of stakeholders.
- Identified key barriers, facilitators, and needs for engaging patients in genetics research.
- Distilled actionable recommendations for incorporating patient perspectives into research design.
Conclusions:
- The AutGO project fostered crucial dialogue between genetics and outcomes researchers.
- This collaboration aims to enhance the translational aspects of genetics research studies.
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