Study protocol of the ASD-Net, the German research consortium for the study of Autism Spectrum Disorder across the lifespan: from a better etiological understanding, through valid diagnosis, to more effective health care

Abstract

BackgroundAutism Spectrum Disorder (ASD) is a severe, lifelong neurodevelopmental disorder with early onset that places a heavy burden on affected individuals and their families. Due to the need for highly specialized health, educational and vocational services, ASD is a cost-intensive disorder, and strain on health care systems increases with increasing age of the affected individual.MethodsThe ASD-Net will study Germany’s largest cohort of patients with ASD over the lifespan. By combining methodological expertise from all levels of clinical research, the ASD-Net will follow a translational approach necessary to identify neurobiological pathways of different phenotypes and their appropriate identification and treatment. The work of the ASD-Net will be organized into three clusters concentrating on diagnostics, therapy and health economics. In the diagnostic cluster, data from a large, well-characterized sample (N = 2568) will be analyzed to improve the efficiency of diagnostic procedures. Pattern classification methods (machine learning) will be used to identify algorithms for screening purposes. In a second step, the developed algorithm will be tested in an independent sample. In the therapy cluster, we will unravel how an ASD-specific social skills training with concomitant oxytocin administration can modulate behavior through neurobiological pathways. For the first time, we will characterize long-term effects of a social skills training combined with oxytocin treatment on behavioral and neurobiological phenotypes. Also acute effects of oxytocin will be investigated to delineate general and specific effects of additional oxytocin treatment in order to develop biologically plausible models for symptoms and successful therapeutic interventions in ASD. Finally, in the health economics cluster, we will assess service utilization and ASD-related costs in order to identify potential needs and cost savings specifically tailored to Germany. The ASD-Net has been established as part of the German Research Network for Mental Disorders, funded by the BMBF (German Federal Ministry of Education and Research).DiscussionThe highly integrated structure of the ASD-Net guarantees sustained collaboration of clinicians and researchers to alleviate individual distress, harm, and social disability of patients with ASD and reduce costs to the German health care system.Trial registrationBoth clinical trials of the ASD-Net are registered in the German Clinical Trials Register: DRKS00008952 (registered on August 4, 2015) and DRKS00010053 (registered on April 8, 2016).

Identifying predictive features of autism spectrum disorders in a clinical sample of adolescents and adults using machine learning

“…Data sample and preprocessing. The study was conducted as a part of the ASD-Net, a research network with focus on ASD that is funded by the German federal ministry of education and research 44 . All participant data came from four specialized ASD outpatient clinics in Germany where current diagnostic gold standard procedures had been applied to confirm or rule out a diagnosis of ASD.…”

Complementary and alternative medicine use in adults with autism spectrum disorder in Germany: results from a multi-center survey

“…This study was conducted as a part of a large clinical and research network, the ASD-Net, which is funded by the German federal ministry of education and research (BMBF), and which focuses on the key challenges in ASD diagnostics, therapy and health service research [21].…”

“…“atypical autism” (F84.1), which is equivalent to PDD-NOS in DSM-IV (299.80)). All participants were diagnosed by experienced clinicians using the current diagnostic gold standard in ASD, the Autism Diagnostic Observation Schedule (ADOS) and – if parents were available – the Autism Diagnostic Interview-Revised (ADI-R) [21, 30, 31].…”

“…It is a high-cost and lifelong condition that affects up to 1% of adults [17]. For children, the prevalence was 16.8 per 1000 children in 2014 [18], with prevalences steadily increasing in recent decades [19–21]. To date, no causal treatment for ASD is known, but there exist various medical, behavioral and educational interventions that aim to mitigate the core deficits related to the disorder, and to improve psychiatric comorbidity [16].…”

Pathways to a diagnosis of autism spectrum disorder in Germany: a survey of parents

“…According to DSM-5, autism spectrum disorder (ASD) is characterized by persistent deficits in social communication and social interaction across multiple contexts accompanied by restricted, repetitive patterns of behavior, interests, or activities [ 1 ]. The prevalence of ASD has been steadily increasing in recent decades [ 2 – 4 ]. Its worldwide prevalence is now estimated at 1% [ 5 , 6 ], with the administrative prevalence in Germany being reported as 0.38% [ 2 ].…”