1. Parkinson’s Progression Markers initiative
Informatics Core
Arthur Toga

2. Informatics Core Supporting the informatics needs of the study
Data integration
Customized data ingress/egress flows
Investigator ready datasets
Biostats datasets
Biologics datasets
Secure data repository
Broad data sharing and dissemination effort
Comprehensive public-facing website
PPMI
Informatics
Study Leadership
Biostatistics Core
Biospecimen Core
Researchers
Imaging Core
LONI meets the ongoing needs of the other centralize the data collection by integrating data from several sources including the clinical EDC, the biospecimen repository, the imaging core.

3. PPMI @ LONI http://www.ppmi-info.org/ PPMI Website PPMI Repository
PPMI Online
The website and the repository work hand-in-hand to provide interested parties with information about the study, study data and progress in a relatively seamless fashion.

4. Data Acquisition PPMI Repository
Imaging Core (IND)
Quality Control
Image Pre-processing
Image
Acquisition
Clinical Core (CTCC)
Quality Control
Study Management
Clinical Data
Acquisition
Biorepository Core (IUSM)
Sample Storage / Quality Assessment
Biological Acquisition
Biological Samples
Biosample Analysts (Various)
FOUND Substudy Data Collection
FOUND Sub Study (UCSF)
Enrollment status
Self-reported Dx
Survey data
Genetic Samples
Genetics Investigators
New Data Source: UCSF for FOUND sub study
Needed Soon: Pathology data dataflow
Study Information
Data Access
Investigator Resources
Data Sharing Tools
Biospecimen Requests
Cell Line Requests
Publications
Inventory
Results
Results
Sample-Subject Relinking
File QC & Organization

5. Downloadable Datasets
Amendments & sequestration requirements have resulted in an increased number of available datasets
*Internal datasets support the data quality/management needs of core project managers and team leads.

6. Available Images

7. Recent Additions Integration of data from FOUND Gait & arm swing data
Enrollment status
Self-reported health status (coming soon)
Risk factors questionnaire (coming soon)
Gait & arm swing data
We’ve done the data integration work, but have received only a sampling of data thus far. UCSF continues to work through data quality processes.

8. New Biospecimen Analysis Results
Project#
Project Name
123
Blood biomarker for Parkinson's disease
124
Total alpha-synuclein measurements in longitudinal CSF samples from de novo PD, Control, SWEDD, Prodromal and Genetic Cohorts
125
A-beta, tau, and p-tau measurements in longitudinal CSF samples from de novo PD, Control, SWEDD, Prodromal and Genetic Cohorts
129
Miro1, a Biomarker for Parkinson's Disease
130
The role of cell-free mitochondrial DNA in neurodegenerative disease
134
Hemoglobin measurements in longitudinal CSF samples from de novo PD, Control, SWEDD, Prodromal and Genetic Cohorts
138
Hemoglobin Biospecimen Analysis

9. Biospecimen Results Results for 1,004 unique participants
Majority of subjects data have been used in 3 different analyses
12 subjects’ data have been used in 17 different analyses
How to read: Assuming all participants could be included in each biospecimen analysis (not true), this shows a breakdown of how many different projects subjects’ samples were included. For example the majority of subjects are represented in the results for 3 different projects.

10. Data Use Applications

11. Over 1.9 million data downloads
download activity
Not shown on this chart, genetic downloads have spiked this year and are already at 8,215 which is a 400% increase over last year.
Over 1.9 million data downloads

12. New Genetic Data NeuroX SNP Data for Prodromal and Genetic Cohorts
WGS hg38 aligned data
24 Cohort Variants PLINK files
74 sets of final report TXT files
DNA Methylation Profiling
Raw idat files
Cell Normalization data
Cell Composition data

13. Whole Genome/Exome Data Sharing
“Exome on a Disk” loaner drives
Total requests: 17
BAM file requests: 10
FASTQ file requests: 14
Whole Genome data
Requests for hs37d5 aligned
FASTQ file requests: 3
New: hg38 aligned data
Some requests were for both BAM and FASTQ files.
This is a time-consuming process.

14. PPMI-Info Website Updates
Cell Line Inventory & Requests
Updated CRFs & Documents

15. The Global Alzheimer’s Association Interactive Network
A Portal to Alzheimer’s Disease Research Data
Connecting Scientists Worldwide
GAAIN is a global cooperative for sharing, investigation & discovery for and by the Alzheimer’s research community.
Powered by the
Laboratory of Neuro Imaging

16. Federated database system funded by the Alzheimer’s Association
Global participation of Data Partners who host a GAAIN client at their location
GAAIN clients interact with a central hub at LONI which aggregates query results for visualization

17. Architecture Addresses Data Partner Concerns
Data Partners have a variety of study information and use different conventions for describing their data.
Data can be cached in computer memory, but are never written to disk - protecting data ownership and privacy.
Investigators can query and visualize harmonized Alzheimer’s disease data.
Data are mapped to the GAAIN common data model.
MAPPED DATA
GAAIN SERVERS
GAAIN PORTAL
PARTNER DATA
(Data Partners can switch ON/OFF if they wish to suspend communication with the GAAIN servers.) on
off
DATA
EXPORT
MAPPING
TOOL
DATA PARTNER CLIENT (A stand-alone client that sits at the Data Partner’s location.)

18. Our Data Partners
34 Data Partners up and running: NACC, NIAGADS, DIAN, N4U, BNA, ADNI, CNDR, LAADC, BIOCARD, WLS, Fundacio ACE, HELIAD, Tgen, etc.
Signed Affiliates: QBIA to provide standardized terminologies for GAAIN and standardized imaging protocols
Many more in discussion or with signed or verbal agreements
GAAIN is in various stages of on-boarding over 80 global Data Partners.

19. GAAIN Data
A collaborative effort to provide researchers around the globe with access to a vast repository of Alzheimer’s disease research data.
A global hub for Alzheimer’s disease research data. We allow researchers to search across multiple data sources instantly and contact these Data Partners directly for data.
Aggregates information about our Partners’ data and shares with researchers without infringing upon Data Partner data sharing policies and regulations. Data Partners always remain in control of their data.

20. Search Data in GAAIN GAAIN InteRrogator GAAIN Scoreboard
Difficult to combine data across domains
GAAIN InteRrogator
A powerful interface to study relationships of variables in self-defined study cohorts across multiple sources. Access to the Interrogator requires a GAAIN Investigator Account.
GAAIN Scoreboard
A front-end tool to showcase the subject counts in GAAIN of a unique search. It is publicly available without a GAAIN account.
GAAIN Cohort Scout
A user-friendly tool to illustrate the breadth of variables in GAAIN and provides the option to share results. It is publicly available without a GAAIN account.

21. Interrogator: Exploration
Each research study has its own data set.
Explore variables shared by a
Data Partner

22. Interrogator: Create Cohorts

23. Interrogator: Pool Data Across Studies

24. Interrogator: Review Results

25. Contact GAAIN Data Partners

26. Keywords: Human Fidelity, HuFi, Virtual Reality, Mixed Reality
How can we track all the senses including proprioception and transfer that data to third party elements for them to have identical sensibilities?
Keywords: Human Fidelity, HuFi, Virtual Reality, Mixed Reality

27. Keywords: Mind upload, Singularity, Future of death
My research will focus on the upload of mind and how people are wrongly convinced that one day we will live forever inside the computers.
Keywords: Mind upload, Singularity, Future of death