NDD-ECHO: A standardised digital assessment tool to capture early life environmental and inflammatory factors for children with neurodevelopmental disorders

Neurodevelopmental disorders (NDDs), such as autism spectrum disorder (ASD), attention-deficit hyperactivity disorder (ADHD), obsessive-compulsive disorder (OCD), and Tourette syndrome are highly prevalent in childhood and are influenced by both genetic and environmental factors. The maternal immune...

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Main Authors: Shrujna Patel, Velda X. Han, Brooke A. Keating, Hiroya Nishida, Shekeeb Mohammad, Hannah Jones, Russell C. Dale
Format: Article
Language:English
Published: Elsevier 2025-07-01
Series:Brain, Behavior, & Immunity - Health
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Online Access:http://www.sciencedirect.com/science/article/pii/S2666354625000699
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author Shrujna Patel
Velda X. Han
Brooke A. Keating
Hiroya Nishida
Shekeeb Mohammad
Hannah Jones
Russell C. Dale
author_facet Shrujna Patel
Velda X. Han
Brooke A. Keating
Hiroya Nishida
Shekeeb Mohammad
Hannah Jones
Russell C. Dale
author_sort Shrujna Patel
collection DOAJ
description Neurodevelopmental disorders (NDDs), such as autism spectrum disorder (ASD), attention-deficit hyperactivity disorder (ADHD), obsessive-compulsive disorder (OCD), and Tourette syndrome are highly prevalent in childhood and are influenced by both genetic and environmental factors. The maternal immune activation (MIA) hypothesis suggests that inflammation during pregnancy can increase the risk of NDDs in offspring. However, current practice focuses mainly on capturing family history of neurodevelopmental and psychiatric disorders. Beyond this, capturing detailed early life environmental data in clinical settings remains challenging. To address this, we developed NDD-ECHO (Neurodevelopmental Disorders-Environmental and Clinical History Online), a standardised digital assessment tool designed to systematically collect maternal and child environmental histories, alongside neurodevelopmental symptom profiles. NDD-ECHO is designed to collaboratively collect information from caregivers with clinician input, covering family medical history, maternal pregnancy history and environmental exposures, child's environmental exposures (including infection) and child's diagnosis, clinical course, and function. The survey, built on the REDCap platform, was piloted in a cohort of 161 children with complex NDDs referred to a tertiary neurodevelopmental clinic. Our results demonstrate that nearly 80 % of children experienced loss of developmental skills, and many had symptom exacerbations triggered by infections or stress, supporting the role of environmental factors in NDD symptomatology. NDD-ECHO, available for free download via the REDCap Shared Library, has clinical and research applications, enabling standardised identification of environmental triggers and exploration of gene-environment interactions. This tool advances research by improving data collection on environmental risk factors and enhances personalised care for children with NDDs. Limitations include reliance on retrospective caregiver reports and the pilot cohort's specialised clinical setting, which may limit generalisability.
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spelling doaj-art-fa642c4469034698bbc09b372a52b26b2025-08-20T03:21:15ZengElsevierBrain, Behavior, & Immunity - Health2666-35462025-07-014610101110.1016/j.bbih.2025.101011NDD-ECHO: A standardised digital assessment tool to capture early life environmental and inflammatory factors for children with neurodevelopmental disordersShrujna Patel0Velda X. Han1Brooke A. Keating2Hiroya Nishida3Shekeeb Mohammad4Hannah Jones5Russell C. Dale6Kids Neuroscience Centre, The Children's Hospital at Westmead, Faculty of Medicine and Health, University of Sydney, NSW, Australia; The Children's Hospital at Westmead Clinical School, Faculty of Medicine and Health, University of Sydney, Sydney, NSW, AustraliaKids Neuroscience Centre, The Children's Hospital at Westmead, Faculty of Medicine and Health, University of Sydney, NSW, Australia; The Children's Hospital at Westmead Clinical School, Faculty of Medicine and Health, University of Sydney, Sydney, NSW, AustraliaKids Neuroscience Centre, The Children's Hospital at Westmead, Faculty of Medicine and Health, University of Sydney, NSW, AustraliaKids Neuroscience Centre, The Children's Hospital at Westmead, Faculty of Medicine and Health, University of Sydney, NSW, AustraliaKids Neuroscience Centre, The Children's Hospital at Westmead, Faculty of Medicine and Health, University of Sydney, NSW, Australia; The Children's Hospital at Westmead Clinical School, Faculty of Medicine and Health, University of Sydney, Sydney, NSW, AustraliaKids Neuroscience Centre, The Children's Hospital at Westmead, Faculty of Medicine and Health, University of Sydney, NSW, AustraliaKids Neuroscience Centre, The Children's Hospital at Westmead, Faculty of Medicine and Health, University of Sydney, NSW, Australia; The Children's Hospital at Westmead Clinical School, Faculty of Medicine and Health, University of Sydney, Sydney, NSW, Australia; Corresponding author. The Children's Hospital at Westmead Clinical School, Cnr Hawkesbury Rd & Hainsworth St, Westmead NSW, 2145, Australia.Neurodevelopmental disorders (NDDs), such as autism spectrum disorder (ASD), attention-deficit hyperactivity disorder (ADHD), obsessive-compulsive disorder (OCD), and Tourette syndrome are highly prevalent in childhood and are influenced by both genetic and environmental factors. The maternal immune activation (MIA) hypothesis suggests that inflammation during pregnancy can increase the risk of NDDs in offspring. However, current practice focuses mainly on capturing family history of neurodevelopmental and psychiatric disorders. Beyond this, capturing detailed early life environmental data in clinical settings remains challenging. To address this, we developed NDD-ECHO (Neurodevelopmental Disorders-Environmental and Clinical History Online), a standardised digital assessment tool designed to systematically collect maternal and child environmental histories, alongside neurodevelopmental symptom profiles. NDD-ECHO is designed to collaboratively collect information from caregivers with clinician input, covering family medical history, maternal pregnancy history and environmental exposures, child's environmental exposures (including infection) and child's diagnosis, clinical course, and function. The survey, built on the REDCap platform, was piloted in a cohort of 161 children with complex NDDs referred to a tertiary neurodevelopmental clinic. Our results demonstrate that nearly 80 % of children experienced loss of developmental skills, and many had symptom exacerbations triggered by infections or stress, supporting the role of environmental factors in NDD symptomatology. NDD-ECHO, available for free download via the REDCap Shared Library, has clinical and research applications, enabling standardised identification of environmental triggers and exploration of gene-environment interactions. This tool advances research by improving data collection on environmental risk factors and enhances personalised care for children with NDDs. Limitations include reliance on retrospective caregiver reports and the pilot cohort's specialised clinical setting, which may limit generalisability.http://www.sciencedirect.com/science/article/pii/S2666354625000699Autism spectrum disorderTourette syndromeObsessive-compulsive disorderEpigeneticExposomeMaternal immune activation
spellingShingle Shrujna Patel
Velda X. Han
Brooke A. Keating
Hiroya Nishida
Shekeeb Mohammad
Hannah Jones
Russell C. Dale
NDD-ECHO: A standardised digital assessment tool to capture early life environmental and inflammatory factors for children with neurodevelopmental disorders
Brain, Behavior, & Immunity - Health
Autism spectrum disorder
Tourette syndrome
Obsessive-compulsive disorder
Epigenetic
Exposome
Maternal immune activation
title NDD-ECHO: A standardised digital assessment tool to capture early life environmental and inflammatory factors for children with neurodevelopmental disorders
title_full NDD-ECHO: A standardised digital assessment tool to capture early life environmental and inflammatory factors for children with neurodevelopmental disorders
title_fullStr NDD-ECHO: A standardised digital assessment tool to capture early life environmental and inflammatory factors for children with neurodevelopmental disorders
title_full_unstemmed NDD-ECHO: A standardised digital assessment tool to capture early life environmental and inflammatory factors for children with neurodevelopmental disorders
title_short NDD-ECHO: A standardised digital assessment tool to capture early life environmental and inflammatory factors for children with neurodevelopmental disorders
title_sort ndd echo a standardised digital assessment tool to capture early life environmental and inflammatory factors for children with neurodevelopmental disorders
topic Autism spectrum disorder
Tourette syndrome
Obsessive-compulsive disorder
Epigenetic
Exposome
Maternal immune activation
url http://www.sciencedirect.com/science/article/pii/S2666354625000699
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