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One Mind Portal 2.0 Update V 1.8

Stephen Larson, Chief Information Officer,

One Mind for Research

Challenge

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• Economic burden of brain disease (US):

• $900 billion / yr (PWC)

• Investments in medical research (US):

• $94 billion in 2003 (JAMA)

• 10x hurdle of efficiency

Challenge

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Information that is critical to more

efficient medical research are

frequently still locked inside silos:

• Patients

• Clinicians

• Researchers in academia &

industry

• Patient advocates

• Technology developers

© 2012 One Mind For Research

Disease Expert,Data &

Analytics Partners

PlatformCapabilityPartners

PTSD, Depression & TBI NetworkOne Mind has identified numerous alliance partners committed to accelerating

knowledge and cures and strong networks are being established

Within the PTSD-TBI Network alone, this is a sample of governmental

agencies, organizations and industry partners who have contributed:

• Funding and human resources

• Data sets• Informatics and IT

• Patient and HCP Advocacy support

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© 2012 One Mind For Research

PTSD-TBI Ecosystem Vision

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1 Citizens give consent to use

their patient data, and maintain

ownership and control of PHR

and EHR data via web portal.

2 Researchers and data

scientists use patient data to

conduct analysis and build

models. Findings reported on

the platform for community

use.

3 Clinicians develop improved

diagnoses, preventions and

treatments based on research

results to deliver better care to

patients. Results reported on

platform for community and

care giver use.

Community members play dual

roles of data providers and data

users throughout the cycle

Federated Data

Platform

Citizens

ResearchersClinicians

& Care Givers

Data is collected and

shared continuously in

federated data

platform by all

community members

via “Honest Broker”

system

Standards for data

curation, rules for

access, and common

classification system

set by One Mind

consortium

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2

3

Underlying system of

incentives drives

community

engagement and

participation

Incentives

Foundation of Common Data Governance,

Privacy, Legal and Ethical Principles

Citizens are

empowered and

engaged through

education

The working group developed this vision for a technology-enabled data sharing

community focused on the Citizen and united through a federated data platform

Integrating Research By Connecting People Online

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Patients

Clinicians

Tech Partners

Advocates

Researchers

One Mind

Portal: Creating

common

ground to build

a culture of

shared

understanding

of disease

Our solution

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Marketplace

Engagement

Data ingestion

Data warehouse

Data analysis

Data ingestion

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Data ingestion

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Neuroscience Information Framework

and Portal 2.0

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Search Engine

Tiered resource ingestion pipeline

Web services

Encyclo-pedia

User account system

Marketplace

Data ingestion

Data warehouse

Data analysis

Engagement

tranSMART case study

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Facilitating International Collaborations

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Dr. Geoff Manley

TRACK-TBI 1 ->

TRACK-TBI 2

Dr. Andrew Maas

IMPACT -> Center

TBI / INTBIR

NINDS,

FITBIR,

NIF

INCF

© 2012 One Mind For Research

Case Study – Dr. Geoff Manley @

UCSF

Chief of Neurosurgery at San Francisco

General Hospital

Professor of Neurosurgery at the

University of California San Francisco

(UCSF).

He is a trauma neurosurgeon with

clinical interests in brain injury, spinal

cord injury and neurocritical critical care.

His translational research interests span

from the laboratory to the bedside.

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© 2012 One Mind For Research

TRACK-TBI Study

TRACK-TBI included 602 subjects with

a history of TBI who presented acutely

to emergency departments in 3 states

and 50 subjects who presented late to a

rehab facility. The majority of these

patients were classified as mild TBI.

Goals:

– Prospectively validate the recently

developed TBI Common Data Elements.

– Collect a highly granular data set that

includes phenotypic, imaging, genomic,

proteomic and multidimensional outcome

data.

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© 2012 One Mind For Research

Case Study – Dr. Geoff Manley @

UCSF

Key questions:

Can tranSMART augment or accelerate data

analysis of TRACK-TBI data?

What are the most desirable analytics to perform on

the TRACK-TBI data via tranSMART?

What use cases beyond what tranSMART provides

would aid analysis of TRACK-TBI data?

What technologies can we bring to bear from One

Mind partners to address additional use cases?

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© 2012 One Mind For Research

TRACK-TBI Case Study

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Case Study

tranSMART

cloud

instance

Data

loading of

TRACK-

TBI

(Thomson

Reuters)

Geoff’s team

(UCSF, others)

Analysis

work

One Mind team

learning, reporting

© 2012 One Mind For Research

Case Study update

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TRACK-TBI data

set loaded!

Initial analyses run

Broadening to

more collaborators

Focus on deeper

analyses

tranSMART

instance loaded on

AWS

Next steps

• TBI Knowledge network supports international collaborations

– Built first around tranSMART

– tranSMART users become initial Portal users

– tranSMART becomes an application within the broader

context of the One Mind Portal

• Produce detailed analysis of TRACK-TBI 1 data in tranSMART

• Support efforts to make open source tranSMART more

pluggable

– REST-based web services layer

– Single sign-on

• Continue to align data standards and data collection globally

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Contributions

• Introduced the challenge One Mind for

Research is working to overcome

• Introduced the concept of the One Mind Portal

• Introduced Dr. Manley and the TRACK-TBI

study

• Reported on progress with the TRACK-TBI

case study around tranSMART

• Pointed towards future steps with tranSMART

and the One Mind Portal

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