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The Canadian National Autism Neuroinformatics Platform Phase I: Development and Validation of a Universal Library of Instruments

Poster Presentation
Friday, May 11, 2018: 10:00 AM-1:30 PM
Hall Grote Zaal (de Doelen ICC Rotterdam)
L. A-Abbas1, R. Bruno2, C. Rogers3, T. Savion-Lemieux2, A. Yusuf4, F. Duhamel5, J. Frei2, S. Bentata5, P. Kostopoulos3, S. Das3, A. C. Evans6, M. Elsabbagh7 and I. Peltekova8, (1)Research Institute - McGill University Health Centre, Montreal, QC, Canada, (2)Research Institute-McGill University Health Centre, Montreal, QC, Canada, (3)McGill Centre for Integrative Neuroscience, Montreal Neurological Institute, McGill University, Montreal, QC, Canada, (4)Psychiatry, McGill University, Montreal, QC, Canada, (5)McGill University Health Center, Montreal, QC, Canada, (6)Montreal Neurological Institute, McGill University, Montreal, QC, Canada, (7)McGill University, Montreal, PQ, Canada, (8)McGill University, Montreal, QC, CANADA
Background:New approaches in neurodevelopmental research increasingly seek to integrate enormous amounts of data through sophisticated informatics so as to determine the relationship between genotypes and phenotypes,both structural and functional,as they change over time during development. Such approaches dwarf the resources of most laboratories, who are increasingly moving toward “cloud computing” solutions.Canada has several large scale projects and cohort studies that currently utilize independent and uncoordinated neuroinformatics solutions. A newly established National Autism Neuroinformatics Platform addresses this informatics problem by connecting existing infrastructure of large scale Canadian studies in autism and deploying high impact solutions already successful in other areas of research,e.g.,CBRAIN and LORIS.Key platform building blocks currently under development include a Testothèque (instrument library),family registry,project-specific data capture platforms,and a Federated/curated gene-brain-behavior data repository.

Objectives: In Phase 1 of this platform development, we focused on integration, documentation, and increasing accessibility of commonly used behavioral and clinical research measures.Hundreds of assessment tools are used in autism studies,overlapping with those used in clinical services.Despite the apparent simplicity and low cost of electronic data capture, few instruments are customized and accessible for large registries and multi-sites clinical studies.This led to the development of a new Testothèque:A library of electronic data capture instruments to support large scale projects at various stages.

Methods:A number of steps were taken to ensure the validity and accessibility of the Testothèque:(1)We integrated all behavioral and clinical research measures currently in use across multiple large scale national autism studies into a common database;(2)we established guidelines for the development and validation of electronic data capture instruments using an iterative process involving technical, clinical, and data experts;(3)we applied the guidelines in the development and validation of bilingual English and French data capture instruments customized for various platforms including RedCap and LORIS;(4)we are currently building a user-friendly interface to increase the accessibility and utility of the Testothèque to the research community.

Results:We completed databasing of over 50 behavioral and clinical research measures into the Testothèque.Informed by users of multidisciplinary backgrounds,fields were designed and populated to facilitate search,selection,and comparison of various measures,e.g.,constructs measured,age range,versions,copyrights.We also designed data capture instruments corresponding to each measure.Bilingual versions were developed, and automated scoring was implemented where possible.Using a new Development and Validation Checklist,each instrument was iteratively validated by two experts (content and technical) and 2-3 reviewers (target users).Validation criteria include:completeness/accuracy of library fields,instrument content and data validity(including captured and scored data),target user experience (e.g.parent,research assistant),and compatibility/inter-operability with existing large-scale project databases.

Conclusions:Our first phase has highlighted key challenges for future integration of behavioral data with other data modalities, including neuroimaging and genetics.Conventional platforms used in autism research do not allow for such integration.Further, implementation of a truly open platform, e.g.,creating an open Testothèque, is currently limited by copyrights and pre-existing agreements restricting data access.However, implementation of the National Autism Neuroinformatics Platform has already led to substantial gains in time efficiency, reduction/elimination of data entry errors,improved progress tracking/reporting,ease of data export, and increased overall transparency in complex study protocols.Some challenges were also identified and will be addressed in subsequent phases.

See more of: Technology Demonstration
See more of: Technology Demonstration