p3g observatory, a tool of harmonization for biobanks and population studies isabel fortier, ph.d....
TRANSCRIPT
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 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 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 CatalogStudy Page (continued)
Methods General Design Participant Selection Data Collection Procedure
Study Catalog Study Page (continued)
Methods (continued) Principal Collected Information DNA Management
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
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 ToolQuestionnaire Page
General InformationIncluding restriction on utilisation and informationon validity
Methods Respondent Administration procedures
Questionnaire
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