ga4gh.org

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• Treat everyone with respect, empathy, consideration, and professionalism
• Consider other points of view, eliminate your own biases
• Acknowledge others’ contributions
• Respect GA4GH and venue policies and rules.

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Code of Ethics and Community Conduct

Help us create an inclusive environment

• Abuse or harassment in any form, or threats thereof
• Violating boundaries when previously communicated
• Photographing or recording others without their consent
• Disrespectful communication and any other behaviours that lead to hostile environment

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The following will NOT be tolerated:

Read the full CECC on our website

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ga4gh.org/code-of-conduct

Read the Guidelines for Respectful Behaviour

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bit.ly/ga4gh-respectful-

engagement

Have questions or want to report? Contact Safe GA4GH Officer Paula Brantner at

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conduct@ga4gh.org

What is a Community of Interest?

Domain-specific groups promoting global cooperation, data sharing and collaborative research through identifying the need for new standards, and implementing existing GA4GH standards.

Cancer

Infectious Disease

Rare Disease

Opportunities

for collaboration

Learn from others’ implementations

Develop a

study group

Propose a

GIF project

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Who’s Involved?

Cancer

Infectious Disease

Rare Disease

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Thank you!

Francis Jeanson

Ontario Brain Institute

Ashley Hobb

DNAStack

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Community Presentations

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Ontario Brain Institute

What OBI is seeking

• Seeking collaborate and advance standards for neuroscience federated data and analysis while maintaining strong privacy and ethical protections
• There’s an opportunity to be “part of a whole that is greater than the sum of the parts”

About OBI

• Aims to improve the lives of people living with a brain disorders
• Catalyzes research discovery, patient care and commercialization
• Collects multi-modal neuroscience data from major brain areas including neurodevelopment, concussion, mental health, cerebral palsy, epilepsy, and neurodegeneration
• Standardize data from over 20,000 participants available for primary and secondary use via its Brain-CODE platform (braincode.ca)
• New Centre for Analytics to help accelerate the development of analytics/AI skills, tools development, and translation to care

ga4gh.org

DNAStack

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Montreal Neurological Institute and Hospital

Group purpose: Facilitate and promote open and reproducible neuroscience

What we do (Neuroinformatics)

• Collect, coordinate and curate Quebec Parkinson Network and related data
• Distributed dataset harmonization and search: neurobagel.org/
• Standardized data curation �and processing: neurobagel.org/nipoppy
• Development and support of large data sharing �and analysis platforms: �Canadian Open Neuroscience Platform, Neurohub

What we are looking for

• Federation of data harmonization, search, access, and authentication
• Practical, shared standards for metadata (phenotypic)
• Shared protocols/services for access to data at the participant / file level

ga4gh.org

iTARGET: individualized Treatment for Autism Response using Genetic-Environmental Targets

Project Goals

1. To identify and apply “whole person” genome, phenome,

microbiome, exposome neurological factors, and common

co-morbidities that underlie ASDs.

• To develop accurate diagnostic algorithms and

individualized therapeutic solutions and “best-fit” therapies.

• Collaborate to advance standards for federated data and analysis while maintaining strong privacy and ethical protections

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Team leads: Phenome/Genome, Database: S Lewis, S Scherer – UBC, MSSNG-Autism Speaks, Excelar Tech., BC, ON, US; Metabolome: D Wishart, Molecular You - TMIC, BC, AB; Microbiome: B Mohn/B Finlay/S Jones - UBC / Molecular You / Microbiome Insights, BC; Neuroscience/Neuroimaging: S Bamji,S Doesburg - UBC, SFU, BC; Data integration, bioinformatics: Qiao, Jones, Scherer - UBC, U of Toronto, BC, ON, facilitated by DNAStack; Community Advocacy: PAFN and Spokes

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Canadian-Biomarker Integration Network for Depression (CAN-BIND)

Goals: Discovering ways to identify the right treatment for the right person to help individuals with depression get well quickly & stay well; Our community includes persons with lived experience, caregivers, researchers, healthcare providers, government agencies, industry partners, and mental health advocates.

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Standardized data collection (including portable EEG) in large-scale (8+ sites) depression clinical trials.

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ga4gh.org

Holland Bloorview/POND

What we do

• From broad labels to personalized health in neurodevelopmental conditions
• Employ multi-platform, multi-source data to define individual patterns of neurodivergence
• Clinical trials infrastructure to rapidly validate and translate individualized approaches to intervention/support into care
• Involved in several national and international data sharing initiatives

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What we seek

• Advance data/metadata standards for biological, phenotypic, and demographic data
• Advance processes for responsible data sharing and federation

ga4gh.org

CAMH/KCNI

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Western University

• Western Institute for Neuroscience: Newly formed institute at Western, with a large focus on Open Science
• BrainsCAN: $66M program from Canada First Research Excellence Fund, has boosted Cognitive Neuroscience research at Western over the past 6 years
• Computational Brain Sciences: Core group of cross-faculty investigators, instrumental in creating new Data Science curriculum on campus and a new interdisciplinary graduate training program in ML in Health and Biomedicine
• Cross-species translation: Newly funded TRanslational Initiative to DE-risk NeuroTherapeutics (TRIDENT, $44M) is building a novel preclinical platform for drug evaluation with cognitive testing and imaging (organoid -> mouse -> NHP)
• Khan Computational Imaging Lab: Develop novel image processing and analysis pipelines, bridge multiple scales with brain tissue (surgical, cadaveric), expanding into omics more recently

ga4gh.org

Hotchkiss Brain Institute

ga4gh.org

Indoc Systems

Indoc has built and scaled numerous data management platforms for use in the medical research space in Canada, the US, and Europe over last 10+ years.

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Our platforms enable data users to integrate, share, and analyze data generated from a range of different sources.

ga4gh.org

Our platforms address the data challenges faced by researchers, amplifying the impact of their work across diseases, technologies, and jurisdictions. We enable:

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• Multi-disease, deep phenotyping research

e.g., Brain-CODE – the Ontario Brain Institute’s neuroinformatics platform

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• “Moonshot” research

e.g., EBRAINS Health Data Cloud – the secure data infrastructure for the Human Brain Project in Europe

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• Population level public health research

e.g., Ontario Health Data Platform – covering all 15 million residents of Ontario

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ga4gh.org

Indoc’s scalable and customizable data platform

Intuitive, powerful, flexible, and scalable data platform

Enables data integration, sharing, and analysis across the full range of data types and sources

Facilitates secure, compliant collaboration for research teams, institutions, government, and industry

Deep domain expertise and comprehensive data management support

indocsystems.com

ga4gh.org

BRIDGE: Brain Research International Data Governance & Exchange

Project Goals: �1. Create data governance tools and resources

2. Write a handbook, containing a summary and collection of laws and regulations pertaining to IDG in various countries (high, medium, and low-income countries)

Ambassador Program:

We are working with Ambassadors on this project in the following areas:

1. Domain Expertise: Law, Ethics, Technology, Lived Experience.
2. Regional Representation: North America, South America, Europe, Africa

Community Engagement Plans:

1. Host global and regional workshops to establish a community of IDG practice
2. Build a consortium for International Brain and Mental Health Data Governance

Team Leads: Franco Pestilli, UT Austin, US; Ricardo Chavariaga, ZHAW School of Engineering, Zurich, Switzerland; Damain Eke, De Montfort University, UK; Amadi Ihunwo, University of the Witwatersrand, Johannesburg, South Africa; Thomas Nichols, Oxford University, UK; Fernanda Tovar-Moll, I’DOR, Brazil

Learn more at: bridge.incf.org

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