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Objective:

Develop BD Surveillance, Care and Prevention programs and a Ukrainian Alliance for the Prevention of Birth Defects (UAPBD).

Design:

Create BD centers using international procedures population-based births and BD registries; tele-medicine facilities; web information resources for BD centers and a core information center in Kyiv, to serve the UAPBD.

Participants:

BD Neonatology teams (ascertain births and BD); Clinical Genetics teams (diagnosis, care coordination, coding); and Librarians/Information Specialists (electronic information development and dissemination). Program coordinator (interacting with UAPBD).

Main outcome measures:

Population based BD data; expanded BD care-prevention protocols; array of web based BD fact sheets; professional and community education events; information dissemination and prevention programs; UAPBD membership and activities.

Results:

Developed: Ukrainian-American BD Centers in Rivne and Lutsk; Birth and BD population registries (Rivne and Lutsk); BD information web site; BD information centers (Rivne, Lutsk, Kyiv); and incorporated the UAPBD, whose most recent partners are the "Young Prizewinners of the International Horowitz Piano Competition" who disseminate the motto that music can convey the ideal that harmony includes a world free from BD. Tens of thousands of Ukrainians hear that BD can be prevented.

Conclusions:

The most critical element is the training (abroad) of BD leaders that are able to establish BD teams. Next, is to provide direct support to BD teams. Endorsements by provincial and local authorities are critical. Communications with administrators of the health system are complex and can be facilitated by provincial partners. Finally, an incorporated non-governmental organization (UAPBD) expedites education programs for professionals, parents and interested public.

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• Patient Care Information Resources:
• International Birth Defects Information Systems (I.B.I.S.)
• Ukrainian Alliance for the Prevention of Birth Defects

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21/January/2002 dc