ARCHIVED - Towards Enhanced Congenital Anomalies Surveillance in Canada

Meeting Summary

November 5-6, 2008
Lord Elgin Hotel, Ottawa

Introduction

PHAC and CCASN hosted a meeting on November 5–6, 2008 in Ottawa to share information and stimulate collaboration across jurisdictions in order to develop a framework for enhanced congenital anomalies surveillance. Participants at the meeting included representatives and experts from across the country as well as international delegates representing European Congenital Anomalies Surveillance , the International Clearinghouse for Birth Defects Surveillance and Research and the National Birth Defects Prevention Network. The objectives of the meeting were:

To foster and promote collaboration in the collection and use of data for an enhanced Canadian congenital anomalies surveillance system.

To review parameters for data collection.

To identify jurisdictional processes in relation to data at the national level.

Through a question and answer format, the meeting raised pertinent issues, facilitated business discussions, and generated the necessary foundational knowledge for implementing the initiative. The meeting also brought about a general understanding of jurisdictional needs and challenges, particularly those concerning the collection and sharing of health data, privacy and confidentiality of personal health information, and resources for establishing or maintaining dedicated surveillance for congenital anomalies. Equally important, the discussions provided a stimulus for action with a consensus that an enhanced system for congenital anomalies surveillance in Canada is necessary and possible.

The purpose of this document is to provide a summary of the meeting proceedings and key outcomes.

Table of Contents

• Summary of Meeting Proceedings
• Appendix A : Enhanced Congenital Anomalies Surveillance Initiative Under “Health and Environment” of the Federal Budget, 2008
• Appendix B : Meeting Agenda
• Appendix C : Meeting Participant List, November 5 & 6, 2008
• Appendix D : Summary of Participant Feedback
• Appendix E : Canadian Congenital Anomalies Surveillance System (CCASS), Current & Proposed Models
• Appendix F : Potential Sources of Congenital Anomalies Surveillance Data