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Even in the era of information "prosperity" in the form of databases and registries that compile a wealth of data, information about ASD and ADHD remains scattered and disconnected. These data systems are powerful tools that can inform decision-making and policy creation, as well as advancing and disseminating knowledge. Here, we review three types of data systems (patient registries, clinical trial registries and genetic databases) that are concerned with ASD or ADHD and discuss their features, advantages and limitations. We noticed the lack of ethnic diversity in the data, as the majority of their content is curated from European and (to a lesser extent) Asian populations. Acutely aware of this knowledge gap, we introduce here the framework of the Neurodevelopmental Disorders Database (NDDB). This registry was designed to serve as a model for the national repository for collecting data from Saudi Arabia on neurodevelopmental disorders, particularly ASD and ADHD, across diverse domains. [ABSTRACT FROM AUTHOR]

Background: We recently adapted the published National Institute for Health and Care Excellence (NICE) Attention deficit hyperactivity disorder (ADHD) diagnosis and management guideline to the Saudi Arabian context. It has been postulated that adaptation of evidence-based clinical practice guidelines to the local healthcare context rather than de-novo development will improve their adoption and implementation without imposing a significant burden on resources. The objective of this paper is to describe the adaptation process methodology utilized for the generation of the first national guideline for management of people with ADHD in Saudi Arabia. Methods: We used the KSU-Modified-ADAPTE methodology for the guideline adaptation process. We describe the full process in detail including the three phases of set-up, adaptation, and finalization. The process was conducted by a multidisciplinary guideline adaptation group in addition to an external review for the clinical content and methodology. Results: The group adapted ten main categories of recommendations from one source CPG (NICE). The recommendations include: (i) service organisation and training, (ii) recognition, identification and referral, (iii) diagnosis, (iv) support, (v) managing ADHD, (vi) dietary advice, (vii) medication, (viii) maintenance and monitoring, (ix) adherence to treatment, and (x) review of medication and discontinuation. Several implementation tools were compiled and developed to enhance implementability including a clinical algorithm, quality measures, coding system, medication tables, translations, patient information, and online resources. Conclusions: The finalized clinical practice guideline provides healthcare providers with applicable evidence-based guidance for the management of people with ADHD in Saudi Arabia. The project also demonstrated the effectiveness of KSU-Modified-ADAPTE, and emphasized the value of a collaborative clinical and methodological expert group for adaptation of national guidelines. [ABSTRACT FROM AUTHOR]

Although autism is a global disorder, relatively little is known about its presentation and occurrence in many developing countries, such as Saudi Arabia. This article describes the reasons for referral and clinical characteristics of a sample of 49 children (37 males and 12 females) diagnosed with an autistic spectrum disorder at a tertiary referral center in Saudi Arabia. The diagnosis of autism was based on DSM-IV criteria supplemented by information obtained from parent and child interviews, rating scales, and examination of school and hospital records. Females were older than males at the time of referral. Eleven patients had a history of seizure disorder and one patient had a chromosome abnormality. Twenty-five patients were taking psychotropic medications and 14 patients were the product of consanguineous marriages. Clinical and research implications of these findings are discussed. [ABSTRACT FROM AUTHOR]

Autism is a neurodevelopmental disorder characterized by a pattern of social and communication deficits. Although it occurs in all cultures and countries, most of the published research has come from Western industrialized countries. In particular, relatively little is known about its clinical correlates and comorbidity in African and Middle Eastern countries. In this paper, we report two cases of G6PD deficiency with autism, recruited as part of a larger study on the occurrence of autism in Saudi Arabia. These findings suggest that a different set of medical conditions may be associated with autism in developing countries. [ABSTRACT FROM AUTHOR]