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International Birth Defects Information Systems
Omni-Net Ukraine Birth Defects Prevention Program

International Birth Defects Information Systems

  • Establish a birth defects surveillance system based on international standards.
  • Contribute to the better care and prevention of birth defects.
  • Contribute to the creation of a Ukrainian Alliance for the Prevention of Birth Defects.

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Informational Consultative Center for Families Having Children with Birth Defects and Congenital Pathology "Veselka"

Diana Akhmedzhanova
Khmelnytsky OMNI-Center
Information Specialist

Since 2006 in Khmelnytsky Medical Genetic Consultation there was started the realization of the Ukainian Social Investment Fund (USIF) project of Informational Consultative Center (ICC) for Families Having Children with Birth Defects (BD) and Congenital Pathology "Veselka".

Implemented by the Ukrainian-American Birth Defects Program and continued by OMNI-Net Ukraine Birth Defects Prevention Program BD monitoring according to international standards showed that prevalence of some birth defects (e.g. neural tube defects) is twice higher than the similar rates in countries of Western Europe (Yuskiv N, Andelin C, Polishuk S, Shevchuk O, Sosynyuk Z, Vigovska T, Yevtushok L, Oakley G, Wertelecki W. High rates of neural tube defects in Ukraine. Birth Defects Research (Part A): Clinical and Molecular Teratology 2004;70:400-402). The problem of fetal alcohol syndrome in children also gives concern.

However, just monitoring without care and early intervention violates basics of the medical bioethics.

The gained experience of BD monitoring informational support encouraged the successive and logical step - realization of the project "ICC for Families Having Children with BD and Congenital Pathology "Veselka" in partnership with USIF.

Needs of families with BD children were investigated by a group of volunteer students of the "Ukraine" University during February-March 2006.

Results of the survey showed that among the most urgent problems for families there are needs in treatment and rehabilitation, contemporary reliable information, communication, affiliation and integration into community, emotional support, love and acceptance, social and legal protection, and a need in help with children care and self-actualization (See pic. 1.).

The survey results
Pic. 1. The survey results

The project is aimed to facilitate such urgent external changes as:

The Informational Consultative Center tasks:

Innovation of the service:

The multidisciplinary approach
Pic. 2. The multidisciplinary approach

The multidisciplinary team
Pic. 3. The multidisciplinary team

The most valuable present day achievement of the center we consider to be the well-coordinated work of the team specialists (medical geneticists, social worker, psychologist, information specialist) together with parental support groups, which enabled creation a lekotek and holding an experience exchange conference "Current Aspects of Early Intervention Regarding Children with Special Needs" with participation of practical early intervention specialists from Khmelnytsky, Kharkiv, Rivne and Volyn oblasts.

Date of report: April 2, 2007

International Birth Defects and Information Systems This site offers information mostly for educational purposes. This site is not intended to alter health care protocols nor to serve as a sole source of medical information. Always seek the advice of your local health care provider.

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