Preferences for Outcome Data Collection and Access in a Pediatric Autism Learning Health Network Registry
Consideration of end-user priorities can improve patient registry data collection, analysis, and utilization. Families may be more willing to participate if they can receive direct benefit by accessing their own data and clinicians use this data to optimize clinical care.
Authors
- Lynne Latten (ORCID: https://orcid.org/0000-0003-1620-0114)
- Vijay Vasudevan
- Donna S. Murray (ORCID: https://orcid.org/0000-0001-8927-4267)
- Lynn Cole (ORCID: https://orcid.org/0000-0003-0645-5199)
- Arun Karpur (ORCID: https://orcid.org/0000-0002-9025-3911)
- Angie Fedele
- Daniel L. Coury (ORCID: https://orcid.org/0000-0001-9754-3914)
- Eric Butter (ORCID: https://orcid.org/0000-0002-1924-9055)
- Wendy Cornell
Institutions
- Autism Speaks (US)
- Cincinnati Children's Hospital Medical Center (US)
- Nationwide Children's Hospital (US)
- CHDI Foundation (US)
- University of Rochester Medical Center (US)
- The Ohio State University (US)
- University of Cincinnati Medical Center (US)
- Center for Autism and Related Disorders (US)
Publication Details
- Journal
- Journal of Developmental & Behavioral Pediatrics
- Published
- 2025-08-15
- DOI
- https://doi.org/10.1097/dbp.0000000000001401
- Primary Topic
- Autism Spectrum Disorder Research
- Type
- article
- Field-Weighted Citation Impact
- 0.00