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"Impact of a Birth Defects (BD) Information System in Ukraine and Beyond"

Serhiy Lapchenko and Wladimir Wertelecki, MD

OMNI-Net Ukrainian Birth Defects Registry and Medical Genetics, University of South Alabama,
307 University Blvd - HSB Suite 1400, Mobile, AL 36688, USA,
251-460-7505, 251-461-1591, wwertele@usouthal.edu

Abstract submitted to the 3-rd International Conference on Birth Defects
and Disabilities in the Developing World

International Birth Defects Information System (IBIS) is a website initially designed to enhance health care services, parental support groups and five BD surveillance teams in Ukraine (http://www.ibis-birthdefects.org). IBIS offers fact sheets in Ukrainian and English plus links to websites, preferably in non-English. IBIS information channels concern birth defects-syndromes, care and prevention themes and support organizations. A companion website (www.consultsos.com/pandora/intro.htm) offers humanistic vistas inclusive of bioethics.

Nearly thirty thousand monthly visitors, mostly from the United States, Canada, UK and Australia visit IBIS. Visitors from Ukraine, where IBIS was systematically promoted by BD surveillance teams, ranked 8th. Users from the Russian Federation and Poland ranked 24th and 26th. Ukrainian visitors to the Pandora website, which was not promoted in Ukraine, ranked 47th, while those from neighboring Russian Federation and Poland ranked 27th and 18th respectively.

The proportion of visitors to IBIS and Pandora were quite similar for all countries except for Ukraine, where visitors to IBIS were substantially more numerous. We conclude that the promotion of IBIS by BD teams was effective because it significantly increased use of BD information by Ukrainians. The data also suggests that offering information materials in vernacular language, in this instance in Ukrainian, is also of considerable importance. Analysis of our experience and data from 1.7 million cumulative visits to IBIS prompts us to seek other partnerships. We welcome BD experts interested in developing and promoting bilingual English-vernacular information to be disseminated through IBIS.

Date of report: May 3, 2007

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