ERIC Number: EJ1460693
Record Type: Journal
Publication Date: 2025-Jan
Pages: 5
Abstractor: As Provided
ISBN: N/A
ISSN: ISSN-0162-3257
EISSN: EISSN-1573-3432
Available Date: 2024-11-18
Reinvigorating the Promise of the National Database for Autism Research (NDAR) to Advance Autism Knowledge
Michelle L. Stransky1,2; Laneva Cobb3; Nina Menon4; Emily Barnard4; Cynthia Belfleur3,5; Lawrence Scahill3,6; Jocelyn Kuhn3,6
Journal of Autism and Developmental Disorders, v55 n1 p385-389 2025
The National Institute of Mental Health created the National Database for Autism Research (NDAR) to accelerate autism knowledge through data sharing and collaboration. However, our experience using NDAR reveals systematic challenges across several aspects of data submission, selection, management, and analysis that limit utility of this resource. We describe our NDAR experience in an ongoing project examining autism intervention outcomes among marginalized racial, ethnic, and gender groups. For this study, we planned to gather data from NDAR to conduct an individual participant data meta-analysis. Eighteen studies met inclusion criteria and reported data on participants at more than one point in time on the Vineland Adaptive Behavior Scales (Vineland) and the Autism Diagnostic Observation Schedule (ADOS). The difficulties with submitting, selecting, downloading, and managing data from NDAR posed limitations on data availability and analysis. Of the 3,850 unique participants in the selected studies, data at multiple time points were available for 312 participants on the Vineland and 278 on the ADOS. No participants had data on all assessment domains. To accelerate autism research via data sharing and collaboration with NDAR necessitates improving the processes for submitting, selecting, and managing data.
Descriptors: Behavior Rating Scales, Adjustment (to Environment), Diagnostic Tests, Observation, Autism Spectrum Disorders, Databases, Research Tools, Database Management Systems, Data Processing, Information Retrieval, Information Management, Research Problems
Springer. Available from: Springer Nature. One New York Plaza, Suite 4600, New York, NY 10004. Tel: 800-777-4643; Tel: 212-460-1500; Fax: 212-460-1700; e-mail: customerservice@springernature.com; Web site: https://link-springer-com.bibliotheek.ehb.be/
Publication Type: Journal Articles; Reports - Research
Education Level: N/A
Audience: N/A
Language: English
Authoring Institution: N/A
Identifiers - Assessments and Surveys: Vineland Adaptive Behavior Scales; Autism Diagnostic Observation Schedule
Grant or Contract Numbers: R41MC45950
Author Affiliations: 1Boston Medical Center, Center for the Urban Child and Healthy Family, Boston, USA; 2Boston University Chobanian & Avedisian School of Medicine, Department of Pediatrics, Boston, USA; 3Children’s Healthcare of Atlanta, Marcus Autism Center, Atlanta, USA; 4Boston Medical Center, Department of Pediatrics, Boston, USA; 5Morehouse School of Medicine, Atlanta, USA; 6Emory University School of Medicine, Department of Pediatrics, Atlanta, USA