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Craniofacial anomalies. HuGENet NETWORK OF NETWORKS WORKSHOP October 2005. Julian Little Canada Research Chair in Human Genome Epidemiology Department of Epidemiology & Community Medicine University of Ottawa. Origins. WHO Human Genetics Programme, 2000 Financial support from NIDCR (US)

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craniofacial anomalies

Craniofacial anomalies

HuGENet NETWORK OF NETWORKS WORKSHOP

October 2005

Julian Little

Canada Research Chair in Human Genome Epidemiology

Department of Epidemiology & Community Medicine

University of Ottawa

origins
Origins
  • WHO Human Genetics Programme, 2000
  • Financial support from NIDCR (US)
  • Five-year project designed to take forward international strategy on craniofacial anomalies
objectives of who project
Objectives of WHO project
  • to develop an international network for consensus building, planning and development for international collaborative biomedical, epidemiological and behavioural studies in the core areas of craniofacial anomalies research
  • to create a directory of research resources in craniofacial anomalies.
  • to create the International Database on Craniofacial Anomalies (CFA)
core areas
Core areas
  • genetic basis of CFA
  • gene-environment interactions involved in CFA
  • prevention of CFA
  • optimal treatment of CFA
consensus meetings
Consensus meetings
  • Nov 2000 – concurrent workshops on (1) genetic basis (2) g-e interaction (3) treatment
  • May 2001 – prevention
  • Dec 2001 – global registry
slide6

2002

2003

consensus meetings1
Consensus meetings
  • Nov 2000 – concurrent workshops on (1) genetic basis (2) g-e interaction (3) treatment
  • May 2001 – prevention
  • Dec 2001 – global registry
  • Dec 2004 – progress and future strategies

________

identifying teams
Identifying teams
  • List developed from WHO reports and literature searches
  • Asked those who attended WHO meetings (1) about concept (2) to review list and extend if possible
  • Contact additional teams identified
teams
Teams
  • with established data and sample collections
  • with ongoing data and sample collections
  • planning to establish data and sample collections
co ordination
Co-ordination
  • Ottawa
  • Dundee (Peter Mossey)
  • Iowa (Jeff Murray)
other issues
Other issues
  • Different designs
  • Samples
    • Governance
    • Further analyses possible?
      • Outside country?
      • Elsewhere within country?
      • Only in own centre?