decentralization: a trend in biomedical research
Transcript of decentralization: a trend in biomedical research
brian m. bot | principal scientist |
2016 sep 28
sage bionetworks
clinical trials transformation initiative
a trend in biomedical research
| @BrianMBot
decentralization:
sage bionetworks
promote open systems, incentives, and norms to redefine how complex biological data is
gathered, shared, and used
our approach
decentralization
sage bionetworks
engage diverse communities of researchersaround biological and analytical problems
too complex for a single institution
our focus
empower citizens to track their own healthand contribute deep phenotypic data to
research topics important to them
decentralization
decentralizationthe process of redistributing or dispersing functions, powers, people, or things away from a central location or authority
wikipedia
pervasiveness of networked information
cloud infrastructure
democratization of research process
gov’t agencies and public pushing for > sharing
decentralization in biomedical research
analytical challenges
unbiased, consistent, and rigorous method assessment
sampling of a space of diverse methods
public / private partnership between NIH, 10 biopharmaceutical companies
and several non-profit organizations
accelerating medicines partnership
data generation data analysis|
($ Millions) Total Project Total NIH Total
IndustryAlzheimer’s
Disease 129.5 67.6 61.9
Type 2 Diabetes 58.4 30.4 28
Rheumatoid Arthritis 41.6 20.9 20.7
TOTAL 229.5 118.9 110.6
accelerating medicines partnership
data generation data analysis|
Target Discovery
Target Discovery
Target Discovery
Target Discovery
Target Validation
Target Validation
Target Validation
Target Validation
Shared Information for
Target Identification
coordinate sharing of early-phasetarget identification insights
accelerating medicines partnership
data generation data analysis|
AMP-AD Collaborative
Workspace
Quarterly Depositions
Broad/RUSH
Mt. Sinai
U Fl/ISB/Mayo
Emory
Sage
Other Partners
Individual Partner Workspaces AMP-AD Data Portal
Consortium Space
Public space
AMP-AD Synapse Project Structure
accelerating medicines partnership
data generation data analysis|
participant-centered consent
1. tiered information access by participants
2. ‘pictorial’ dominant on first information tier
3. text dominant on second information tier
4. require perfect score on short assessment
first 6 months
16,585 participants consented
14,684 participants enrolled
9,520 agreed to ‘share broadly’
1,087 self reported PD diagnosis
recruitment
mPower
six month data releasemPowertask name type of task and
scheduleunique
participants unique tasks
demographics survey - once 6,805 6,805
MDS-UPDRS survey - monthly 2,024 2,305
PDQ8 survey - monthly 1,334 1,641
memory activity - t.i.d. 968 8,569
tapping activity - t.i.d. 8,003 78,887
voice activity - t.i.d. 5,826 65,022
walking activity - t.i.d. 3,101 35,410
data generation
Parkinson’s Disease Foundation Eli Lilly AstraZeneca Apple Verily Intel Infocepts Posit Science
MIT The Ohio State University University of Otago University of Texas Health Science Center Istanbul Sehir University University of Iowa University of Virginia University of Toronto Johns Hopkins University Vanderbilt University University of Rochester McGill University Xi'an Jiaotong University University of Washington Harvard University
mHealth research communityParkinson
study data released before any primary publication 60+ independent ‘qualified researchers’ working towards building a PD research community
Sage Bionetworks joins The Scripps Research Institute (TSRI) for PMI Cohort Program via Participant Technology Center (PTC)
2016 July 06
data generation
Sage Bionetworks joins The Scripps Research Institute (TSRI) for PMI Cohort Program via Participant Technology Center (PTC)
In collaboration with Scripps Participant Technologies Center (PTC):
• Sage Bionetworks will be responsible for the patient consent and data governance, as well as the community outreach and participant engagement efforts of the PTC
• Sage Bionetworks will also be engaged in the scientific and engineering work to develop new methodologies for measuring symptoms of health and disease, including developing symptom measurements for phone, wearable, and other sensors
data generation
democratization of research
pervasiveness of networked information
cloud infrastructure
gov’t agencies and public pushing for > sharing
increasingly decentralized research ecosystem
brian m. bot———————— principal scientist community manager sage bionetworks [email protected] @BrianMBot
thank you