(1) Ukraine OMNI-Net and University of South Alabama (2) Crimea Autonomous Republic OMNI-Net, Ministry of Health Medical Care of Child and
Maternity Division and Medical Genetics Center (3) Kyiv OMNI-Net and Ukrainian Alliance for the Prevention of Birth Defects (4) Ukraine OMNI-Net and Lviv National Medical University (5) Kherson OMNI-Net and Children’s Regional Hospital (6) Uzhhorod OMNI-Net and Regional Medical Genetics Service (7) Rivne OMNI-Net and Medical Genetics Center at the Regional Diagnostic Center (8) Khmelnytsky OMNI-Net and City Perinatal Center
Background: Following the Chornobyl disaster (1986), it was determined that the regions most impacted by ionizing radiation were in the Northwest of Ukraine. Public concerns about the potential teratogenic and genetic impacts of Chornobyl were acute. In 1991, Ukraine separated from the Soviet Union and in 1996 our program was launched in response to a suggestion from the then Minister of Health, Dr. Andryj Serdyuk. The planning, implementation and results are reported in J Appl Genet 47(2), 2006, pp.143-149; the program’s website (http://ibis-birthdefects.org/) and 12 companion abstracts. Method: Core strategies stressed include: 1, implementations in provinces (oblasts); 2, BD teams inclusive of medical geneticists, neonatologists, English-competent information - telecommunications coordinators and other specialists; 3, stress on links and partnerships with local, regional, national and international counterparts including parental support groups. Results: Initial international funding of a Ukrainian-American BD program evolved into the current OMNI-Net partnerships formalized in 2004 as a Ukrainian not-for-profit organization registered in Kyiv. Resource centers (RC) sustain population-based neonatal as well as population-based BD registries in five regions and are located in provincial capital cities (Lutsk, Rivne, Khmelnytsky, Kherson, Simferopil). Currently, a population-based pregnancy registry is under development in Rivne. OMNI-Net partners rely on advice and exchanges with experts from Ukraine, UK, France, Italy and the U.S. BD data is reported to the European Registries of Congenital Anomalies and the International Clearinghouse BD Surveillance and Research Systems. Social and public health impact of OMNI-Net is illustrated by the creation by the city of Rivne of a model center for early interventions for infants with special healthcare needs, which offers its services to children identified by an international research program focused on alcohol impacts on the unborn. Conclusion: OMNI-Net demonstrates the capacity and effectiveness of provincial healthcare systems to engage in complex partnerships and to enhance BD care and prevention policies. OMNI-Net experience with “de-centralized” province centered implementations offers an alternative to “capital city centered” international initiatives that may be of interest to other Eastern European countries.
Early Identification and Prevention of Fetal Alcohol Spectrum Disorders:
the NIAAA International Collaborative Initiative on FASD in Eastern Europe
Christina Chambers, M.D., University of California San Diego
Although Fetal Alcohol Spectrum Disorders (FASD) are among the most common developmental disabilities worldwide, prevention, intervention and early identification of affected children remain challenging. As part of an international effort to address these issues, Eastern European collaborators are participating in an international Collaborative Initiative on Fetal Alcohol Spectrum Disorders. These longitudinal studies will help to standardize diagnostic criteria and methods of assessing the full spectrum of FASD, as well as enhance understanding of the infant neurobehavioral phenotype of FASD. These studies also aim to improve early case identification through prenatal ultrasound, standardized infant examinations, and 3D imaging, and will evaluate the contribution of maternal nutritional status as a potentially modifiable influence on susceptibility to FASD in infants of alcohol drinking mothers. Results from study collaborators in Ukraine have identified predictors of risky drinking in women of reproductive age, and have demonstrated that detailed information about risky drinking before and during pregnancy can be obtained in prenatal care settings. In addition, researchers in Ukraine have demonstrated that selected prenatal ultrasound markers obtained through routine 2-D scans are significantly correlated with both maternal alcohol consumption and physical features of FASD in the offspring. These promising results and continuing work can help to contribute to prevention and intervention for FASD in Eastern Europe and other parts of the world.
Elevated Neural Tube Defects (NTD) Rates in Ukraine – Highest in Polissia
Wladimir Wertelecki, M.D. (1) and Lyubov Yevtushok, M.D. (2)
(1) Ukraine OMNI-Net and University of South Alabama (2) Rivne OMNI-Net and Medical Genetics Center at the Regional Diagnostic Center
Background: Population birth defects (BD) surveillance by the OMNI-Net started in 2000 and by 2002 data from Rivne and Volyn oblasts (provinces) of North West Ukraine showed that rates of NTD were sharply elevated (21 per 10000 live births, N. Yuskiv et al., Birth Defects Res. A Clin. Mol. Teratol, 2005). Rivne data suggested that prevalence rates were highest in the Rivne-Polissia, a region impacted by chronic ionizing radiation from the Chornobyl disaster. Polissia has boggy soils with low humus and high peat contents resulting in high soil-to-milk transfer coefficients of Cs-137. The Polissia population is known for self-sufficiency, reliance on locally grown food, consumption of game, wild mushrooms and berries. The likelihood is high that nutrition in Polissia may be deficient in micronutrients and folates, particularly during winters; that nutrients and water are contaminated by Cs-137, including milk and potatoes which are the main dietary staples. Another Cs-137 significant source is reported to be aspiration of contaminated dust and smoke from burning biomass. (See companion abstract by B. Yevtushok and by L. Yevtushok). Method: Analysis of NTD 2000-2006 data from Rivne Polissia and non-Polissia regions and official background demographic, nutrition and radiodosimetry data.. Results: NTD prevalence rate in Rivne Polissia and non Polissia is 27.0 and 19.6 (21.6 and 16.6 for isolated NTD, contrasts that do not reach statistical significance). However more detailed analysis by raions (counties) is warranted and is ongoing. Every Rivne - Polissia raion is officially designated as impacted by ionizing radiation; the rest are designated as “clean”; there are nearly 200 inhabited points; the largest yearly birthrate is in the city of Rivne (nearly 3000); official Cs-137 monitoring is conducted solely in the Polissia region; available reports show sharp variations by place and time; and in some villages Cs-137 levels in milk have increased with time. Another observation concerns seven instances of conjoined twins of which six were born in the Rivne oblast (one twin had spina bifida) and the other in Khmelnytsky oblast. Conclusions: Broadening retrospective and prospective investigations of the Rivne Polissia population are warranted.
(1) Omni-Net, Ukraine (2) University of South Alabama, Mobile, AL, USA (3) University of New Mexico, Albuquerque, NM, USA (4)University of California, La Jolla, CA, USA
Background: Fetal Alcohol Spectrum Disorders (FASD) are among the most pervasive childhood developmental disorders worldwide. A comprehensive program for prevention of FASD calls for targeted intervention/prevention among women in the preconception period who are current risky drinkers. An understanding of the characteristics of reproductive aged women who engage in risky drinking is essential for the development of a targeted prevention program, and these characteristics may vary by culture. Methods: We screened pregnant women in two oblasts in Ukraine over a two year period and recruited 84 women who reported binge and/or frequent drinking early in pregnancy and 82 women who reported little to no alcohol consumption during early pregnancy. Using a standard in-person interview, we collected information on demographics, pregnancy and medical history, current and past maternal and paternal drinking habits, and knowledge of FASD. We compared these groups to identify predictors of heavy episodic or binge drinking in early pregnancy. Results: Similar to findings in other countries, lower maternal socioeconomic status, tobacco use, unplanned pregnancy, no use of prenatal or multivitamins, and lack of accurate knowledge regarding the effects of alcohol on the developing fetus were all significant predictors of binge drinking by mothers early in pregnancy (p<0.05). Frequent and/or heavy paternal drinking was also strongly associated with maternal binge drinking. Fathers who drank 2-4 times per week, relative to those who drank less than 1 time per week, were 32 times more likely (95% CI 8.9-118.6) to have female partners who binge drank in pregnancy. Similarly, fathers who consumed 5 or more drinks per occasion, relative to those who drank only 1-2 drinks per occasion, were 39 times more likely (95% CI 12.2-124.7) to have female partners who binge drank in pregnancy. Conclusions: These findings suggest that interventions among Ukrainian women who drink alcohol should be targeted to women in the preconception period with other high risk behaviors and poor knowledge regarding FASD, and that family drinking culture may represent another opportunity for intervention.
Prenatal Ultrasound to Detect Effects of In Utero Alcohol Exposure
Yevtushok, Lyubov(1); Onishchenko, Svetlana (1);Wertelecki, Wladimir (2); Bakhireva, Ludmila (3); Chambers, Christina (4); Jones, Kenneth L (4); Hull, Andrew (4)
(1) Omni-Net, Ukraine (2) University of South Alabama, Mobile, AL, USA (3) University of New Mexico, Albuquerque, NM, USA (4)University of California, La Jolla, CA, USA
Background: Fetal Alcohol Spectrum Disorders (FASD) are among the most pervasive childhood developmental disorders worldwide. Earlier recognition of affected pregnancies can contribute to efforts aimed at reducing maternal drinking throughout the remainder of pregnancy, and in identification of high risk infants who should be targeted for early postnatal intervention. However, few studies have examined the utility of prenatal ultrasound in identification of alcohol-affected pregnancies. Methods: We screened pregnant women in two oblasts in Ukraine over a two year period and recruited 84 women who reported binge and/or frequent drinking early in pregnancy and a comparison group of 82 women who reported little to no alcohol consumption during early pregnancy. We performed second and third trimester ultrasound evaluation of fetal growth and specific fetal brain measures. We compared ultrasound measures between the two groups to identify those measures that differed significantly on the basis of alcohol consumption. Results: Using second-trimester ultrasounds, alcohol-exposed fetuses had shorter mean femur length, as well as shorter mean caval-cavarial and frontothalamic distance relative to comparison fetuses, after controlling for maternal smoking (p<0.05). The significant finding of shorter frontothalamic distance persisted in third trimester ultrasound measurements. In addition, mean orbital diameter and biparietal diameter measurements were significantly smaller in the alcohol-exposed group relative to comparison fetuses in third trimester ultrasounds, after controlling for maternal smoking (p<0.05). Conclusions: Significant differences in selected somatic and brain measurements suggest that these markers may be further explored for clinical utility in prenatal detection of alcohol-affected children.
Dietary and Activity Patterns and Implications on Birth Defects in the Chornobyl Impacted Rivne-Polissia Region in Ukraine
L. Yevtushok, M.D. (1), K. Needham (2), Serhiy Lapchenko (3), Wladimir Wertelecki, M.D. (4) and R. Garruto, Ph.D. (2)
(1) Rivne OMNI-Net and Regional Diagnostic Center Medical Genetics Center (2) State University of New York at Binghamton. (3) Volyn OMNI-Net Center and Regional Children’s Clinical Hospital (4)Ukraine OMNI-Net and University of South Alabama.
After the Chornobyl disaster in 1986, population-based birth defects monitoring was initiated in 2000 in five oblasts (provinces) in Ukraine. The northern half of Rivne province, a region known as Polissia, is contaminated by radiation. Systematic monitoring shows consistently high rates of neural tube defects and other developmental disorders. These observations prompted a dietary and subsistence activities survey about consumption of Cs137 contaminated foodstuffs, water, smoke, and agricultural and gardening exposure through dust and soil. Contamination levels measured from one up to 1590 Bq/l in milk, 129 Bq/kg in potatoes, and 146 Bq/kg in soil.
We report preliminary information provided by 99 of 350 surveyed pregnant women residing in the Polissia region of Ukraine. Information gathered concerned consumption of local and imported meat, dairy, fruit, vegetable, and grain products, as well as water use and beverages, including alcohol consumption during pregnancy. We also gathered information about activities likely to expose individuals to radiation through contact with soil, such as working in fields and collecting wild foods or firewood. Results indicate that most foods consumed in Rivne-Polissia are local or wild and thus contaminated with Cs-137. The government has recommended that milk be imported because of the risk of contamination of local milk. However, less than 5% of individuals reported consuming imported milk. All participants reported consuming local vegetables (none imported), and 97% of the major fruits consumed were locally grown. Furthermore, 73% reported obtaining water from highly contaminated wells or brooks, the rest consumed piped water. In addition, 30% drank alcoholic beverages often as homemade or local beer and liquor. Information about outdoor activities, particularly agricultural fields, and contact with contaminated soil or smoke from burning biomass. Overall, our data indicate that some people in Polissia consume diets that may be deficient in micronutrients, consume alcohol during pregnancy and are exposed to chronic radiation. The extent to which each may be involved in birth defects and developmental nervous system disorders in the Polissia region is unknown and calls for further investigations.
(1) Ukraine OMNI-Net and Lviv National Medical University (2) Alabama Department of Public Health, Division of Statistical Analysis (3) Rivne OMNI-Net and Regional Children’s Hospital (4) Rivne OMNI-Net and Regional Diagnostic Center (5) Volyn OMNI-Net and Regional Children’s Territorial Medical Center (6) Khlmenytsky OMNI-Net and City Perinatal Center
Background: In Ukraine, vital statistics are reported by local authorities in aggregate form and reflecting former U.S.S.R. definitions only recently updated to comply with those used by the international health community. The OMNI-Net established a neonatal registry concurrently with a birth defects surveillance system, both relying on international standards. Method: To assess infant mortality and its causes, we compared 2006 data from three oblasts: provinces of Rivne, Volyn and Khmelnytsky, on 41826 live births. Data on 40895 white infants born in Alabama in 2005 were used for comparisons. In addition, a separate concurrent review of causes of infant deaths in Rivne was undertaken. Results: We focus upon infants of near normal birth weight and gestation because they are most numerous in terms of infant mortality. Live born weighing from 2500 to 4499 g. represented 94.3% and 90.3% for Ukrainian and Alabama infants respectively; birth weight for those gestated less than 38 weeks and those gestated 38 or more weeks were 7.8% vs. 22.1% and 92.12% vs. 77.7% for Ukraine and Alabama respectively. Infant mortality among those with birth weights above 1999 g. was 0.74% (includes 185 infants weighing between 2500 and 3500 g.) and 0.5% (includes 67 infants weighing between 2500 and 3500 g.) for Ukraine and Alabama respectively. Review of medical records in Rivne showed that birth defects, mainly cardiac malformations, were the leading cause of infant mortality, followed by infections, asphyxia and hemorrhage. The reviewers gained the impression that the latter causes of death were more prevalent in the 2500 to 3500 g. group. Conclusion: The review team will expand the study of death records in other OMNI-Net regions. Conclusions and recommendations will be forwarded to city, region and national authorities to reduce mortality and morbidity particularly that of infants with near-normal gestational ages and near-normal birth weights (the most numerous category).
Cyberspace and Birth Defects (BD) Programs in Ukraine
Serhiy Lapchenko (1) and Wladimir Wertelecki, M.D.(2),
(1) Volyn OMNI-Net Center and Regional Children’s Clinical Hospital Ukrainian Birth Defects Registry, Ukraine, firstname.lastname@example.org (2) Department of Medical Genetics, University of South Alabama, Mobile, Alabama, USA
Background: IBIS (http://www.ibis-birthdefects.org) is a web site resource for five OMNI-Net centers that provides access to selected and current BD information to professionals (mostly in English) and to parents and the public (mostly in Ukrainian). IBIS also plays a central role to electronically publish and disseminate translated and adapted materials to local circumstances and to implement “open book” policies upheld by OMNI-Net by posting reports and data sharing. Method: To assess the effectiveness of IBIS in Ukraine on regions other than those where OMNI-Net Centers are located, we compared patterns of utilization of IBIS with those of a Companion web site – Pandora Word Box (PWB) (http://www.pandorawordbox.com/) dedicated to medical etymology and humanism given solely in English. Results: Google search engine ranks IBIS and PWB among the ten top web sites concerned with “Birth Defects” and “Medical Etymology and Humanities”. Over 30,000 and 20,000 pages of IBIS and PWB respectively are viewed weekly. The proportion of visitors from Ukraine to IBIS is drastically higher than for PWB (visits from Ukraine rank 2nd and 30th respectively). Visits to IBIS within Ukraine originate mostly in regions lacking OMNI-Net Centers. The global popularity of IBIS was not anticipated and is perhaps due to an emphasis on providing sources of information in other than English languages, in particular those from the developing world. Over 1 million IBIS pages are opened yearly. Conclusions: IBIS is an essential resource for OMNI-Net partners. It provides a shared cyberspace for coordinated development and sharing of information as well as its dissemination. Dialogue with international IBIS visitors indicates that cloning core features with emphasis on additional languages, particularly those from less affluent nations is desirable.
(1) Uzhhorod OMNI-Net and Regional Medical Genetics Service (2) Volyn OMNI-Net and Regional Medical Genetics Center (3)Kherson OMNI-Net and Children’s Regional Hospital (4) Cherkasy Perinatal and Medical Genetics Regional Center (5) Rivne OMNI-Net and Regional Diagnostic Center (6) Khlmenytsky OMNI-Net and City Perinatal Center
Background: To assess knowledge and attitudes regarding pre-conception health and birth defects prevention in Ukraine, we initiated a pilot survey in six heterogenous regions (northwest, Rivne and Volyn oblasts; west, Transcarpathia oblast; south, Kherson oblast; and central-west, Khmelnytsky and Cherkasy oblasts). Method: A questionnaire was designed by OMNI-Net partners with consideration to previous surveys conducted by the March of Dimes and other agencies. Pregnant women seeking family planning or medical genetic services were asked to volunteer anonymously information about their ethnicity, health, previous pregnancies and negative pregnancy outcome risk factors. Information was recorded by health care personnel. Results: Preliminary analyses indicate that pregnant women are willing to provide information more readily about medical risk factors and less so about risky lifestyles. Most pregnancies were planned (81 %); 27% consulted a physician; 68% knew about the birth defects preventive effects of folic acid; 10% smoked before pregnancy; 5% did when already pregnant; 16 % consumed alcohol and most of believed that in small quantities it was harmless. Conclusions: OMNI-Net partners concluded that the preliminary data warrants small adjustments to the contents of the inquiry protocol and that it should be implemented in multiple regions because the information will be valuable to design context specific approaches to improve pre-conception health and prevention of birth defects.
Reduction of Infant Morbidity and Mortality – Gastroschisis as one Index
N. Zymak-Zakutnya, M.D.(1), A. Ropotan, M.D. (1)., I. Shumlyanski, M.D (2)., H. Vashchylin, M.D. (3) L. Lyatetska., M.D. (4) , T. Tekuchenko, M.D. (5), V. Yenikeyeva, M.D. (2) Z. Sosynyuk M.D (2)., L.Yevtushok, M.D. (2), S. Kalynka, M.D. (3) S. Onishchenko, M.D. (4) , N. Afanasyeva, M.D. (5) and W. Wertelecki, M.D. (6)
(1) Khmelnytsky OMNI-Net, City Children’s Hospital and Perinatal Center (2) Rivne OMNI-Net, Diagnostic Center, Children’s Hospital and Medical Genetics Department (3) Volyn OMNI-Net and Regional Children’s Territorial Medical Center (4) Kherson OMNI-Net and Children’s Regional Hospital (5) Crimea Autonomous Republic OMNI-Net, Ministry of Health Medical Care of Child and Maternity Division and Medical Genetics Center. (6) Ukraine OMNI-Net and University of South Alabama
Background: Gastroschisis (GS) is a malformation that can often be detected prenatally and when treated early and effectively is often compatible with survival. The GS rates reported by OMNI-Net to EUROCAT for 2005-2006 were 6.27 per 10000 live births. GS can serve as a sentinel anomaly to assess the effectiveness of prenatal diagnostic services, neonatal care and surgical interventions. This project, among others, seeks to provide input toward fact-based prospective enhancements of maternal child health policies seeking to reduce infant mortality, morbidity and developmental disorders in Ukraine. (See companion abstract by Korzhynskyy and by Afanasyeva). Method: Analysis of 143 instances of GS recorded by OMNI-Net registries and the corresponding medical records and other sources of information. Results: Preliminary analysis showed that in Ukraine GS is often detected prenatally (71%); termination of pregnancy due to GS is high (54% vs. 14% in Europe as per EUROCAT 2001-2006); GS, in live-born Ukrainian infants, is generally an isolated malformation (80%); and that in Ukraine GS is a highly lethal malformation (59% compared to 13% in the U.S.). The main factor contributing to the high mortality was delayed transfer of infants to specialized facilities followed by a high prevalence of post-surgical complications. Conclusion: The preliminary analysis provides data confirming informal reports that hundreds of Ukrainian infant-lives can be saved with enhancements of existing infant transportation systems and a better regionalization and experience by pediatric surgical teams focused on the care of infants. Enhancements in this domain will also impact the care of infants with spina bifida, cardiac and other non-lethal malformations. Therefore, this and other companion studies by OMNI-Net will continue and be expanded to four additional oblasts. (See companion abstract by Korzhynskyy.)
Seasonal Variation of NTD Rates in Rivne – Ukraine
Medical Student, Ternopil Medical University, Ukraine
Background: Neural Tube Defects (NTD) are reduced by supplements of folic acid, which sustains the view that folate deficiency may be a cause of these highly lethal and unusually common malformations in Ukraine, particularly in the Chornobyl impacted Ukrainian Polissia region. Method: We analyzed estimated times of conception by season. The data analyzed was from Rivne: 217 NTD patients born between 2000-2006, of which 179 (82%) were isolated NTDs. Results: Most conceptions of isolated NTD cases (29%) occurred during winter (December, January, February); 22% in spring; 22% in the summer (June, July, August); and 22% in the fall. The seasonality trend for complex NTDs was stronger, 39% and 26% in the winter – spring period and a decrease to 21% and 13% during summer – autumn. Conclusion: The seasonal variations in prevalence of NTD rates have been noted in other regions of the world. Because the Polissia region in Rivne oblast, as Polissia regions elsewhere, is a unique ecological and demographic zone, the higher rates of NTD in the Rivne – Polissia population may also be elevated in Polissia populations in other areas of Ukraine and Belarus. The reliance of the “Polischuks” (woodland people) on home and locally grown nutrients (see companion abstract by L. Yevtushok), the seasonal NTD variations may be indicative, at least in part, of folate deficiencies related to the winter and spring seasons within the overall possible confounding effects of chronic low dose radiation since DNA repair is folate dependent.
(1) Executive Committee of the City of Rivne (2) Rivne OMNI-Net and Regional Diagnostic Center (3)Pahinets Developmental and Early Interventions Center (4) Rivne Parental Organizations for Children with Special Needs (5) Rivne State Humanities University (6) Ukraine OMNI-Net and University of South Alabama
Background: It is self-evident that among the most prevalent, serious and burdensome birth defects is mental subnormality. Among the early goals of the OMNI-Net Birth Defects Initiative (1998) in Ukraine was to link the program with a center for early interventions inclusive of orphaned young children. In 2001, following a series of promotional events and workshops, a parental organization arose in Rivne to advocate for the creation of an early intervention center for infants and young children with Down syndrome and other developmental disorders. In 2002, the U.S. Ambassador to Ukraine granted funding to formalize plans, which in 2003 were adopted by the Rivne City Council. Method: The Rivne OMNI-Net center provided training materials, organizational templates and general support to parents and community leaders advocating the creation of what became the “Pahinets Developmental Center” (PDC). International partners from Australia, U.S.A., Poland and other nations contributed training material and participated in training events. Results: In 2004, the Rivne City Administration donated physical facilities (75 m2) and funded four full-time positions. Currently, the PDC operates in a renovated stand-alone building and has 66 full-time professionals, staff and support personnel (inclusive of laundry, kitchen, etc.). PDC provides day-care services and programs to 50 children with special developmental needs between the ages of 2 months to 8 years. For normative purposes, the center also provides pre-school education to 40 “normal children” up to the school age of 6. Regarding early interventions directed at orphans, the achievement have been quite modest. Students from the College of the Rivne State Humanities were offered an elective program to gain field experience in child development by visiting regularly a specific orphan over the span of an academic school year. Student-orphan pairs, according to anecdotal reports, developed bonding and positively impacted the behavioral range of infants. However, bureaucratic barriers and lack of resources remain to be resolved. Conclusions: The implementations by the PDC can serve as a replication template for other regions. Encountered bureaucratic barriers and lack of resources to introduce programs to promote a fuller development of orphaned infants and children are also lessons learned relevant to other regions.
Expanding a Population Birth Defects Surveillance Program by a Pregnancy Registry in Rivne Ukraine
Viktor Kovalyov, M.D. (1), Mariya Dumanovska, M.D. (1), Viktoriya Yenikeyeva (1), Ihor Shumlyanski, M.D.(2), Lyubov Yevtushok, M.D.(2), Zoryana Sosynyuk, M.D. (2) and Wladimir Wertelecki, M.D. (3)
(1) Regional Health Care Administration and City Executive Committee. (2) Rivne OMNI-Net and Regional Diagnostic Center (3) Ukraine OMNI-Net and University of South Alabama
Background: Rivne OMNI-Net Center, established in 1999, arose as a component of a medical genetics team offering clinical and prenatal services to the Rivne oblast (province). In 2005, reports to EUROCAT of population birth defects data began and nearly 45% of pregnant women underwent ultrasonographic fetal examinations. In 2007, a pilot study to assess alterations of fetal developmental markers in women who consumed alcohol began in partnership with two U.S. university teams funded by the National Institutes of Health. In 2008, a decree by the Ukrainian Ministry of Health and financial support by Oblast authorities provided the center with additional state-of-the-art ultrasonography equipment and mandated that the center reach all pregnant women at high risk and provide at least one examination to all pregnant women between 18 and 22 weeks gestation. Method: The upgraded facilities and legal standing of the prenatal diagnosis component of the Rivne OMNI-Net and Rivne Regional Diagnostic Center call for an upgraded data collection system to become a population-based Rivne pregnancy register linked with the existing birth defects surveillance and neonatal registry databases, among others. Results: Ongoing OMNI-Net surveys (see companion abstract by E.Y. Patskun, et al.) are defining the data elements and offer field experience needed to design an optimal pregnancy population registry attuned to the socio-demographic realities in Ukraine. Conclusion: Investment in the development of a neonatal, birth defects and related programs have garnered the official and public support needed to formulate an integrated health care and data collection system from pre-conception to early interventions for infants and children in Rivne. (See companion abstract by Bohatyrchuk-Kryvko, et al.).
(1) Crimea Autonomous Republic OMNI-Net and Simferopol Medical Genetics Center. (2) Khmelnytsky OMNI-Net and City Perinatal Center (3) Rivne OMNI-Net and Regional Diagnostic Center Medical Genetics Center (4) Volyn OMNI-Net and Regional Children’s Clinical Hospital (5) Kherson OMNI-Net and Children’s Regional Hospital
Background: PKU is a relatively common disorder and is detected by neonatal screening in nearly one of every 6000 births in Ukraine. It is undisputed that poorly controlled PKU in women is a cause of fetal mal-development, particularly of the nervous system. Method: We initiated an inquiry among health professionals and families caring for patients with PKU to learn about female patients, their reproductive history and pregnancy outcomes. Results: Preliminary summary based on information about 118 female PKU patients from 5 regions in Ukraine shows that 70% are intellectually deficient and that 5 delivered children diagnosed as having PKU embryopathy. Conclusion: Further pursuit of this inquiry is warranted and already suggests that current PKU screening programs and early treatment regimes should be expanded by a national registry of female patients to better administer family planning services, provide anti-conceptive or other alternatives as well as to promote strict PKU control before conception and during gestation.