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"Impact of a Birth Defects (BD) Information System in Ukraine and Beyond"
Lapchenko, S., Wertelecki, W.
OMNI-Net Ukrainian Birth Defects Program, Rivne, Ukraine
Department of Medical Genetics, University of South Alabama, Mobile, Alabama, U.S.A.
International Birth Defects Information Systems (IBIS) (http://www.ibis-birthdefects.org) is a web resource initially designed for five BD surveillance teams in Ukraine. IBIS offers information in Ukrainian and English and links to other websites, preferably in non-English. IBIS information channels concern birth defects-syndromes, care, prevention themes and support organizations. A companion website (www.consultsos.com/pandora/intro.htm) offers humanistic vistas inclusive of bioethics.
The monthly visitors to IBIS approach 31 thousand and are mostly from the United States, Canada, UK and Australia, while those from Ukraine rank 8th. Visitors from the Russian Federation and Poland rank 24th and 26th. Ukrainian teams promoted IBIS while Pandora was not. Visitors to Pandora from Ukraine rank 47th, while those from neighboring Russian Federation and Poland rank 27th and 18th respectively.
The proportion of visitors to IBIS and Pandora were similar for all countries except for Ukraine where visitors to IBIS were substantially more numerous than for Pandora.
We conclude that the promotion of IBIS in Ukraine was effective and that the information materials in Ukrainian also played an important role. Analysis of our experience in Ukraine and data from 1.7 million cumulative visits to IBIS prompts us to seek additional partnerships. We welcome BD experts interested in developing and promoting informational materials in other bilingual English - vernacular versions to be disseminated through IBIS.
Date of report: May 3, 2007