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

Abstract

This study aims to outline the establishment of an autism registry program in the East Azerbaijan province of Iran, delineate its components, present the initial descriptive analysis results of the registered cases, and outline potential opportunities for further utilization of registry data. The children and adolescents of age ⩽18 years, who met the Fourth Edition of the Diagnostic and Statistical Manual of Mental Disorders or Fifth Edition of the Diagnostic and Statistical Manual of Mental Disorders criteria for autism spectrum disorder, were eligible for inclusion in the autism spectrum disorder registry program. A total of 1120 cases were registered from January 2015 to December 2023. The majority of the participants were male (81.60%), diagnosed with autism spectrum disorder between the ages of 3 and 7 years (41.90%), born through cesarean delivery (73.56%), and received their primary diagnosis from a psychiatrist (85.49%). According to the Fourth Edition of the Diagnostic and Statistical Manual of Mental Disorders criteria, approximately 83% of the cases were diagnosed with autistic disorder, 3% with Asperger’s disorder, and 13% with pervasive developmental disorder not otherwise specified. The autism spectrum disorder registry has the potential to contribute significantly to the development of effective policies for diagnosis and treatment services. By linking children’s clinical and treatment data, it can help shape healthcare policies and services on a broader scale. Lay 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.