1. 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 Avenue Montreal (Qc) H3A 1A4

2. 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

3. 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

4. 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

5. Study Catalog Quick Search Form Search by  Study Name  P3G Membership  Affiliation

6. 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

7. 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

8. Study Catalog Information in Excel Format

9. 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

10. Study Catalog Study Page (continued)  General Information  Background  Objectives

11. Study Catalog Study Page (continued)  Methods  General Design  Participant Selection  Data Collection Procedure

12. Study Catalog Study Page (continued)  Methods (continued)  Principal Collected Information  DNA Management

13. Study Catalog Study Page (continued)  Status  Ethics and Governance  Available Documents  Publications

14. 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

15. Questionnaire Search Tool Search by  Keywords  Studies  Questionnaires

16. Questionnaire Search Tool Predefined tree of keywords

17. Questionnaire Search Tool  Health Information  Physical Conditions  Life Habits / Behaviours  Sociodemographic Characteristics  Physical Environment  Social Environment

18. Questionnaire Search Tool Result List  Query and result summary  Two list formats  Blocks of questions  Questionnaires

19. Questionnaire Search Tool: Question Block Page

22. Questionnaire Search Tool Questionnaire Page  General Information Including restriction on utilisation and information on validity  Methods  Respondent  Administration procedures  Questionnaire

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

24. 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

25. Development team…  Research assistant:Janet Faith  Developers: Alice Carey Catherine Côté Nathalie Emond Philippe Laflamme Louis Létourneau

26. 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