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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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Participation at the 21-st EUROCAT Registry Leaders' Meeting

Nataliya Zymak-Zakutnya, M.D.
Head of Khmelnytsky OMNI-Center

On June 9-10, 2006 in Graz (Austria) there was held the 21-st Annual Registry Leaders' Meeting of EUROCAT (European Concerted Action on Congenital Anomalies and Twins). International Children's OMNI-Net Not-For-Profit Organization was represented by the Supervisory Board Director Professor W. Wertelecki, M.D. and Coordinator of Khmelnytsky OMNI-Center N. Zymak-Zakutnya.

In 2006 EUROCAT expanded and announced about including new members: South-Eastern Ireland, Slovenia, Latvia, and OMNI-Net Ukraine Birth Defects Prevention Program (OMNI-Net UBDPP). Each new member had an opportunity to present its registry. Presentation of OMNI-Net UBDPP underlined the importance of OMNI-Net registries advantages such as active population based birth defects monitoring system, diagnosis and coding by clinical geneticists, active involvement of local existing personnel, powerful informational resource - "International Birth Defects Information Systems (I.B.I.S.)" website, systematic use of digital photography for diagnosis and teleconsultation purposes, English speaking staff.

A great interest at the Meeting was raised by the report of Prof. W. Wertelecki "Rates of Neural Tube Defects in Ukraine Highest in Chornobyl Impacted Regions". The reported data indicates significant levels of spina bifida prevalence and conjoint twins incidence especially in polluted areas of Polissya region. Prof. W. Wertelecki emphasized that this situation requires further molecular, genetic, and epidemiological studies involving international resources. The results are likely to elucidate critically important facts to the Ukrainian public and contribute to a better understanding of the complexities of the causes of birth defects (BD).

Prof. W. Wertelecki is making his report
Prof. W. Wertelecki is making his report

EUROCAT Project Leader Helen Dolk expressed an intention to visit Ukraine and get more acquainted with the activities of OMNI-Net Registries.

A report of the invited speaker Dr. Ron Gray, National Perinatal Epidemiology Unit, UK, concerned the issues of epidemiology, FAS surveillance and prevention. He reported about the existing active projects (e.g. GENASIS (EU), FASSnet (USA) and was also aware about the Ukrainian OMNI-Net activities in this field.

The program of the Meeting included discussions of such issues as Central Registry development, statistical surveillance and cluster investigation, reports from working groups and research projects, in particular data quality indicators, statistical surveillance strategy, analysis of EUROCAT data on drugs and prenatal screening policies.

Participants of the 21-st EUROCAT Registry Leaders' Meeting
Participants of the 21-st EUROCAT Registry Leaders' Meeting

During the session meetings there were given detailed instructions to Guide 1.3 (Instructions for the Registration and Surveillance of Congenital Anomalies) use. As well there was presented the Anatomical-Therapeutic-Chemical Coding Book (ATC) developed for EDMP (EUROCAT Data Management Program) data input beginning from the year 2005.

Revising plans and prospectives H. Dolk underlined the role of EUROCAT as the collaborating center for epidemiologic surveillance of congenital anomalies and expressed expectations for successful cooperation with new and existing members.

Date of report: June 21, 2006
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