Virtual Research Environment Professor Richard O. Sinnott Anthony Stell 25 th September 2010

ENS@T-CANCER Virtual Research Environment

Professor Richard O. Sinnott & Anthony Stell25th September 2010

[email protected]

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Overview

• Proposal Work Plan Recap

• ENS@T-CANCER VRE– Introduction to and demonstration of ACC

registry– Organisation and Support for Clinical Studies

• PMT-exemplar– Biobanking Support and Data Linkage

• Next steps

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VRE::Proposal Description• A state-of-the-art Virtual Research Environment (VRE) will provide the foundation

for all of research phases and clinical trials associated with ENS@T-CANCER. • The VRE will comprise a clinical registry for patients with ACC/MPH and a

collection of tools for security-oriented data access, linkage, analysis, annotation and storage for the associated work packages.

• It will support training and educational materials, and offer collaborative tools such as wikis and discussion forums. The VRE will allow incorporation of clinical annotation and hosting of secondary data from the human-based research projects in order to create a wider scientific research environment seamlessly and securely providing access to clinical and biomedical data sets.

• To address the sensitivity of data access and linkage, the VRE will support the secure upload and querying of clinical and other data sets associated with adrenal tumours, and where feasible the federated access to data sets across partner sites.

• In the realisation of this model in ENS@T-CANCER we shall allow for seamless linkage of clinical data sets available through the VRE with biomaterials and associated data sets without direct data linkage and hence risk of further data disclosure or linkage with other data sets. This model is especially suited to biobanking situations where clear separation of clinical information and biomaterials is demanded for confidentiality and data disclosure concerns.

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VRE::Proposal Description

UoM

• Tasks– #1: Supporting the Requirements of the ENS@T-CANCER Partner Sites– #2: Continuous security evaluation, risk assessment and ethical evaluation of the

ENS@T-CANCER VRE– #3: Design, Development, Testing and Maintenance of the ENS@T-CANCER VRE– #4: ENS@T-CANCER VRE Clinical Trial Support– #5: ENS@T-CANCER VRE Biobanking Support

• Resourcing– 75 man months for VRE development

• 60 man months (Anthony Stell)• 12 man months (Jipu Jiang)• 3 man months for WP1 lead

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Track Record• National e-Science Centre (I, II, III) • Dynamic Virtual Organisations for e-Science Education • Biomedical Research Informatics Delivered by Grid Enabled Services• GridNet• Grid Enabled Microarray Expression Profile Search• Glasgow early adoption of Shibboleth• Joint Data Standards Survey• ESP-Grid• GridNet-2 • HPC Compute cluster award• Sun industrial sponsorship • OGC Collision • OMII-Security Portlets• OMII-RAVE• Integrating VOMS and PERMIS for Superior Grid Authorization • NCeSS Technical Management • CESSDA PPP• Pharming of Therapeutic RNA• Grid Enabled Occupational Data Environment• Towards an e-Infrastructure for e-Science Digital Repositories• Grid enabled Biochemical Pathway Simulator• Virtual Organisations for Trials and Epidemiological Studies • A European e-Infrastructure for e-Science Repositories• Modelling, Inference and Analysis for Biological Systems up to the Cellular Level• Drug Discovery Portal• Advanced Grid Authorisation through Semantic Technologies ShinTau (Supporting Multiple Shibboleth Attribute Authorities)• Grid-enabled Virtual Safe Settings

• Scottish Bioinformatics Research Network (SBRN) • Generation Scotland Scottish Family Health Study • Meeting the Design Challenges of nanoCMOS Electronics

(nanoCMOS)• EU FW7 EuroDSD• EU FW7 AvertIT• Breast Cancer Tissue Biobank• Data Management through e-Social Science (DAMES)• NeSC Research Platform (NRP)• NeSC Information Network (NIN)• ESF Network for Study of Adrenal Tumors• Scottish Health Informatics Platform for Research (SHIP)• National E-Infrastructure for Social Simulation (NeISS)• Enhancing Repositories for Language and Literature

Researchers (ENROLLER)• Proxy Credential Auditing Infrastructure for the NGS• EU FW7 European Network for Study of Adrenal Tumors

Cancer Research Platform• EU R4SME Diagnosis of Parkinsons Disease (DiPAR)• EU European Platform for Study of Wolfram, Alstrom, Bardet

Biedl

Completed On-Going

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Anthony(and ENSAT work to now)

ENSAT-CANCER Consortium Meeting

Anthony Stell, National e-Science Centre, Glasgow25th September 2010, Munich, Germany

ENSAT Registry

ACC - Structure

Identification

DiagnosticProcedures

TumorStaging

Biomaterial

Surgery

Radiotherapy

Chemotherapy

Mitotane

Chemo-embolisation

Follow-Up

Pathology

Treatments

ACC - Functionality

• [Walkthrough – video…]

Pheo, NAPACA, APA

Clinical Studies – Pheo-PMT

• [Walkthrough – video…]

Pheo, NAPACA, APA

Clinical Studies - Others

• FIRSTMAPP• ADIUVO

• Required…– Identifiers– Central information (i.e. “once only information)– Forms– Repeated patterns

Identifiers

• ENSAT ID– e.g. FRPA1-3

• Study ID– e.g. 1VGYDR001

• Common codes– Country and centre (enclosed)

• Ramifications– Foreign keys from study to registry

Security

• Programmatic security

• Encryption

• Audit trails

Biobanking and data linkage

Clinicians ENSAT Registry

BiomaterialIDs

Biomaterial

Clinician AParis, Centre 1(Patient Mr X)

FRPA1-3

Local LIMS (XYZ123)

1VFRP13001=XYZ123

1VFRP13001

Researchers

BioCentreParis

1VFRP13001

Researcher, Birmingham UK

?

?

?

Ethics

Consent

1VFRP13001

1VFRP13001

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Next Steps• Hardening ACC and Pheo/PGL

– Schema for database(s)– Functionality (data validation/…)– Usability

• Requirements capture– Functional imaging platform – Adrenal cancer pathology platform – Adrenal cancer genomics platform – Hormone biomarker platform – Translation adrenal cancer models – Clinical trials

• ADIUVO/FIRSTMAPP– eCRFs for different phases– Data extraction– …

Centralised vs

Federated Models

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Next Steps …ctd

• Security policy– Definition and enforcement

• Access and authorisation management

• Collaboration– Emails– Audio-confs/skype– Pre-2011 meetings

• $$$

• Data quality management?

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Questions

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