Designing a minimum dataset for autism spectrum disorder registry in Iran

The reported prevalence of autism spectrum disorders (ASDs) has been showing a marked increase over the past 20 years. Therefore, a uniform data gathering system for ASD registration could prominently enhance plans for managing ASD worldwide. So, in the current investigation the authors aimed to design and validate the Persian version of a minimum dataset (MDS) for being administered in the national ASD registries. METHODS: The current study is a mixed-method study with both quantitative and qualitative methods providing and validating a form of MDS in four phases according to Delphi method. The proposed MDS consisted of 11 categories containing coding responses. Content validity (CV) was evaluated based on 20 expert’s suggestions and opinions. Item-CV Index (I-CVI) and Scale-CVI were administered to evaluate and validate the items and questions in the proposed MDS. RESULTS: Twenty researchers from different disciplines scored each question and item. By taking into account the scores, the validity appraisal was provided for each item by computing the I-CVI value. Results showed that 41 out of 76 items had the value I-CVI less than 0.78 and were kept as relevant; 35 items were eliminated due to a value below 0.70. The Scale-CVI /Ave of the relevance for the entire form was 0.9396. CONCLUSION: The Persian version of MDS for ASD registry was found to be valid. Such MDS can be utilitarian for health cares and policymaking purposes by gathering and updating standard data for developing local and national registries.