Ukrainian-American Birth Defects Program
Realization Results of the Program's Goals
Goal 1. Implementation of Birth Defects Surveillance According to International Standards.
- Birth defects surveillance according to international standards has been implemented. Oblast newborns registries are being created in Rivne, Volyn, Kherson, Khmelnytsky Oblasts and Crimea.
Implementation of international standards gives a possibility to use a common methodology concerning birth defects surveillance and to elaborate common approaches concerning birth defects prevention. It allows comparing obtained data with international one, participation in international research projects and to be a member of birth defects surveillance international organizations.
- Due to the Program's activities Ukraine (UABDP, Rivne and Volyn Oblasts) became an associated member of International Clearinghouse for Birth Defects Monitoring Systems (ICBDMS), Rome, Italy. You can get acquainted with copies of annual reports to ICBDMS, presented by our Programs for 2002 with data of 2000 and for 2003 with data of 2001.
In the frames of collaboration with ICBDMS UABDP took part in two projects - "Gastroschisis Case Control Study" and WHO Project "Craniofacial Anomalies Study". The Results of the last one were published on the WHO website: http://www.who.int/genomics/anomalies/data/en. Ukraine is among the participating countries.
Neonatologists, geneticists and pediatricians take an active part in the birth defects surveillance.
With the purpose of photo documentation of birth defects cases and implementation of telemedicine, 40 digital cameras were given to physicians from all oblasts which are members of the Program including Kyiv (Institute of Pediatrics, Obstetrics and Gynecology of the Academy of Medical Sciences of Ukraine), Lviv (Pediatrics and Neonatology Chair of Post-Diploma Education Department of Lviv National Medical University named after D. Halytsky), Donetsk (Neonatology Course of Post-Diploma Education Department of Donetsk State Medical University).
- The results of birth defects surveillance showed that prevalence of Down syndrome corresponded to expected level according to delivery rate among women of older age. According to this data our birth defects surveillance system can provide accurate surveillance of Down syndrome prevalence.
- UABDP Birth defects surveillance showed that general prevalence of pregnancies affected by neural tube defects was 2.1 per 1000 newborns. It exceeds 4 times the level which can be achieved in case of using folic acid by women of reproductive age. Birth defects registries showed that during 2000-2003 in Rivne and Volyn Oblasts there were registered 213 cases of neural tube defects (table 1). 170 of them could be prevented by using folic acid. It is the basis for recommendations to implement fortification of flour with folic acid in Ukraine.
Table 1
Prevalence of Spina Bifida (SB), Anencephaly (AN), Encephalocele (EN)
during 2000-2003 in Rivne and Volyn Oblasts
| |
Isolated BD |
Plus other anomalies |
Total |
| |
SB |
AN |
EN |
SB |
AN |
EN |
|
| Livebirths (101240) |
45 |
1 |
4 |
6 |
0 |
3 |
59 |
| Stillbirths (451) |
7 |
13 |
4 |
1 |
0 |
0 |
25 |
| Induced abortions* |
33 |
57 |
6 |
10 |
4 |
2 |
112 |
| Spontaneous abortions* |
7 |
7 |
0 |
1 |
2 |
0 |
17 |
| Total |
92 |
78 |
14 |
18 |
6 |
5 |
213 |
* general number of spontaneous and induced abortions is not reported
Programmers of the UABDP are working on elaboration of new original software "Birth Defects Registry".
Expert Epidemiologist Mr. Clark Andelin from Emory University (Atlanta, USA) worked in the Volyn and Rivne UABDP Centers during June-July 2002, 2003. He provided the epidemiological estimation of neural tube defects data and held the training of geneticists concerning the basis of epidemiological analysis. As the result of his work it was published an article "High Rates of Neural Tube Defects in Ukraine" in "Clinical and Molecular Teratology" journal.
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