P3G Observatory, a Tool of Harmonization for

Biobanks and Population Studies

Isabel Fortier, Ph.D.

Vincent Ferretti, Ph.D.

Denis Legault, MPA

Mylene Deschenes, LL.M.

McGill University and Genome Quebec, Innovation Center

740 Dr. Penfield AvenueMontreal (Qc) H3A 1A4

Objectives

Present The mission of the Observatory The current structure and contents The agenda pursued

Discuss the services required by the IWG’s from the Observatory

Mission

The P3G Observatory mission is to Provide tools that support researchers in the harmonization,

development, and implementation of epidemiological and genomics studies

Disseminate scientific and technical information developed and collected by P3G Cores and IWGs

Make feasible both comparison and sharing of information and data between studies

To initiate this mission, the Observatory contains A study catalog A companion tool for questionnaire development and harmonization

Study Catalog

Offers

Access to standard and detailed information on population projects in genomics

Easy selection of projects according to specific criteria (study design, number of cases, etc)

Generation of synthesis tables

Study Catalog Quick Search Form

Search by Study Name P3G Membership Affiliation

Study Catalog Advanced Search

Advanced Search by Method

Study and sampling design; target and current number of participants; participants selection criteria

Data Sources Current Study Status Confidentiality of Participants

Study Catalog Result List

Query and result summary

Two list formats Brief and Summary

PDF files for selected studies

Excel file with detailed information on selected studies

Study Catalog Information in Excel Format

Study Catalog Study Page

A standard way to describe Population Studies in Genomics

8 Sections General Information Background Objectives Methods Status Ethics and Governance Available Documents Publications

Study Catalog Study Page (continued)

General Information Background

Objectives

Study CatalogStudy Page (continued)

Methods General Design Participant Selection Data Collection Procedure

Study Catalog Study Page (continued)

Methods (continued) Principal Collected Information DNA Management

Study Catalog Study Page (continued)

Status

Ethics and Governance

Available Documents

Publications

Tool for the development and harmonization of questionnaires

Offers Quick and easy access to questions - tagged by keywords - asked

by major population health studies To facilitate the development of clinical and risk factor

questionnaires To facilitate the harmonization / comparison of the variables

collected between studies

Access to description of the studies, questionnaires administration designs, and to the questionnaires themselves

Questionnaire Search Tool

Search by Keywords Studies Questionnaires

Questionnaire Search Tool

Predefined tree of keywords

Questionnaire Search Tool

Health Information Physical Conditions Life Habits / Behaviours Sociodemographic Characteristics Physical Environment Social Environment

Questionnaire Search ToolResult List

Query and result summary

Two list formats Blocks of questions Questionnaires

Questionnaire Search Tool: Question Block Page

Questionnaire Search Tool: Question Block Page

Questionnaire Search Tool: Question Block Page

Questionnaire Search ToolQuestionnaire Page

General InformationIncluding restriction on utilisation and informationon validity

Methods Respondent Administration procedures

Questionnaire

Web Site, Pre-launch version www.p3gobservatory.org

Agenda

February - April 2005 Concept development Keywords list and data collection forms construction

April - September 2005 Web application development Collection of descriptive information for 12 studies Segmentation by keywords of 4 questionnaires

September - October 2005 Interface testing and corrections Validation of the entered data with PI’s

October 2005 - June 2006 Addition of new studies and new questionnaires Identification of future needs and development of concept for new

interfaces

Development team…

Research assistant: Janet Faith

Developers: Alice CareyCatherine CôtéNathalie Emond Philippe LaflammeLouis Létourneau

What’s expected from you…

Suggestions for new studies and new questionnaires Validation of current contents for your study Provide feedback on site interface Identify IWG’s requirements for future development of

the Observatory