Design, methodology, and early findings of an autism registry program: ABBILAR project

Autism. 2024 Dec 21:13623613241305723. doi: 10.1177/13623613241305723. Online ahead of print.

Abstract

The autism spectrum disorder (ASD) registry program presents a unique opportunity to facilitate advanced research in various aspects of ASD, particularly in low-resource countries like Iran. Given the international significance of autism research, registry programs play a critical role in data sharing. ASD registry programs have been effectively established in high-income countries over a few decades; however, there are limited examples from low- and middle-income countries. This study presents a firsthand description of the design and primary findings of a 9-year established ASD registry program from the northwest of Iran. It elucidates the program's feasibility for other low-income settings, providing valuable insights for researchers and policymakers.

Keywords: Fifth Edition of the Diagnostic and Statistical Manual of Mental Disorders; Fourth Edition of the Diagnostic and Statistical Manual of Mental Disorders; autism; diagnosis; registry; statistics.