James Fitzpatrick|Elizabeth J Elliott|Jane Latimer|Maureen Carter|June Oscar|Manuela L. Ferreira|Heather Carmichael Olson|Barbara R. Lucas|Robyn Doney|Claire Salter|Elizabeth Peadon|Genevieve Hawkes|Marmingee Hand
The Lililwan Project: study protocol for a population-based active case ascertainment study of the prevalence of fetal alcohol spectrum disorders (FASD) in remote Australian Aboriginal communities
The George Institute for Global Health|The George Institute for Global Health|University of Sydney|Sydney Children’s Hospitals Network|The George Institute for Global Health|University of Sydney|The University of Notre Dame Australia|The George Institute for Global Health|University of Sydney|Royal North Shore Hospital|Curtin University|University of Sydney|Sydney Children’s Hospitals Network|WA Country Health Service|The University of Notre Dame Australia
anecdotal reports suggest highrisk drinking pregnancy common remote australian communities alcohol teratogenic may cause range lifelong conditions termed fetal alcohol spectrum disorders fasd australia diagnostic services fasd prevalence neurodevelopmental disorders remains unknown 2009 aboriginal leaders remote fitzroy valley north western australia identified fasd community priority initiated lililwani project partnership leading research organisations project establish prevalence fasd health developmental problems schoolaged children residing fitzroy valley providing data inform fasd prevention managementthis populationbased active case ascertainment study children born 2002 2003 residing fitzroy valley participants identified fitzroy valley population project communicare databases parentscarers interviewed using standardised diagnostic questionnaire modified local language cultural requirements determine demographics antenatal exposures birth outcomes education psychosocial status child comprehensive interdisciplinary health neurodevelopmental assessment performed using tests operational definitions adapted local context internationally recognised diagnostic criteria applied determine fasd prevalence relationships pregnancy exposures early life trauma neurodevelopmental health education outcomes evaluated using regression analysis results reported according strobe guidelines observational studiesethics approval granted university sydney human research ethics committee western australian aboriginal health information ethics committee western australian country health service board research ethics committee kimberley aboriginal health planning forum research subcommittee results disseminated widely peerreviewed manuscripts reports conference presentations media