Professor Anthony J. Brookes (University of Leicester) on the ePAD project (http://www.synapse-managers.com/epad/)

1. EU Project Informatics Alignment Workshop
EPAD: European Prevention of Alzheimer’s Dementia
Anthony Brookes (University of Leicester)
Imperial College London, UK
April 28th-29th 2015

2. What is EPAD
• Brief description of project objectives:
– Deliver a standing, double-blind, Alzheimer’s disease proof-of-concept adaptive trial,
sustainable beyond the project
– Build on existing cohort, trial, analytical & informatics work (Aetionomy, EMIF-AD)
– Thereby...
a. Improve the chance of successfully preventing Alzheimer’s dementia
b. Better understand early aspects of AD before dementia develops
– In practice…
Engage ~30 study sites ('Parent Cohorts') to establish 24,000 participants ('EPAD
Register') and undertake longitudinal follow-up on 6,000 ('EPAD Cohort'), of which
1, 500 will be invited into trials to test new treatments for prevention of dementia.
Ongoing feedback with modelling groups.
• Funded by: IMI & EFPIA - initial combined budget of €64M
• Time frames: 5 years (Jan2015 --- Dec 2019)
• Members:
– Pharma partners (13) Academic groups (16)
Non profit organization(1) Commercial Suppliers (5)

3. Fingerprint Browser
(cohort discovery)
- questionnaire answers
- browsing interface
- identifies suitable PCs by their features
Café Variome
(subject discovery)
- subject data, retained locally/safe
- federated, real-time query portal
- returns summary counts and IDs
- options for controlled data sharing
Modelling
(in context of adaptive trial)
- CROs to manage databasing
- ‘generous’ data sharing

4. Data types collected by EPAD
Data Type Standards Platform Date
availability
Restricted
access
TranSMART
support
Free text and
semi-structured
questionaire
data
No EMIF Browser Open No ??s
Diverse but
shallow existing
phenotype data
No Cafe Variome Intra-project
discovery
N/A ??
Diverse,
extensive
phenotype data
Partly Cafe Variome
and EMIF
browser hybrid
Controlled
discovery and
sharing
Yes ??
Longitudinal
phenotype data
Yes Controlled Yes ??
Clinical trial
data
Yes Controlled Yes ??