- Training of physicians. In 1999 two geneticists, a neonatologist and an information specialist from Rivne and Volyn Oblasts attended training courses in the Department of Medical Genetics of the University of South Alabama (Mobile, USA). The training included: studying birth defects surveillance system according to international standards in the Department of Medical Genetics of the University of South Alabama, taking medical genetics course according to the program of medical college of the University, and a course of treatment and prevention of birth defects under the leadership of prominent specialists of medical genetics in the USA.
The information specialist studied the organization of library science in the USA, main medical databases existing in Internet, search engines of medical information, methods of work with computer, photo and video hardware, basis of publishing, etc.
Knowledge gained by specialists during the training was used during establishing and realization of the Program in Ukraine.
In 2001 and 2002 specialists from Khmelnytsky and Kherson Oblasts attended trainings in the Volyn and Rivne OMNI-Centers. In April, 2002 the same training was attended by specialists from Crimea. The training program included studying of birth defects surveillance according to international standards, information search in Internet, holding telemedical consultations, studying of appropriate software, composing fact sheets for IBIS.
During April 22-24, 2002 in Kyiv there was held a training course "Diagnostic approaches to dysmorphic patients" for neonatologists, geneticists under the leadership of Prof. W. Wertelecki (Director of the Program) and Prof. J. Martinez (Department of Medical Genetics of the University of South Alabama).
Trainings and seminars were regularly held for neonatologists, geneticists and pediatricians.
Prof. K. Jones (sitting left) shows how to examine a child
During 2003 series of trainings were held for physicians from all oblasts involved in the Program and from other regions of Ukraine as well. Trainings were devoted to fetal alcohol syndrome (FAS) diagnosis and were held under the leadership of Prof. W. Wertelecki and Prof. K. Jones (Professor of Pediatrics, Chief of Dysmorphology and Teratology Department of Medical School, California University, San Diego, USA). Lectures and trainings were held in Kyiv, Rivne, Lutsk, and Kherson. Besides, Prof. K. Jones delivered a lecture devoted to early FAS diagnosis for the participants of All-Ukrainian Conference for Neonatologists, which was held in Kyiv Post-Diploma Education Academy named after Shupyk in April, 2003.
In June, 2003 in Lutsk and Rivne Prof. K. Jones, Prof. Ch. Chambers (epidemiologist, Pediatric Department of California University, San-Diego, USA) and Prof. A. Hull (obstetrician specialized in fetus and mother medicine, California University, San-Diego, USA, consultant of Ultrasound Prenatal FAS Diagnosis Program) held trainings concerning FAS diagnosis in newborns (examination, diagnosis and photodocumentation), birth defects prenatal diagnosis and methods of pregnant women selection into FAS risk groups for oblast geneticists, neonatologists, obstetricians and oblast orphanages pediatricians.
Prof. A. Hull
Prof. Ch. Chambers
Methods of children examination were recorded to videotape for further usage as an educational material for physicians training.
Total number of physicians who took FAS training courses was about 400 persons.
Geneticist from Volyn OMNI-Center Dr. N. Yuskiv following recommendations of Director of the Program Prof. W. Wertelecki successfully passed exams and was accepted for studying at Emory University (Atlanta, USA), speciality "Birth Defects Epidemiology" (Muskie Fellowship grant).
On April 14, 2001 the seminar "Basic Health Care Informational System Elements with Examples of Data Analysis" took place in Kyiv. The seminar was held for physicians and with the participation of Prof. O. Wolowyna (USA).
Seminars "Basic Health Care Informational System Elements" with the participation of Prof. O. Wolowyna (USA) took place on December 6, 2001 in Kyiv, December 7-8, 2001 in Rivne and December 10-11, 2001, in Lutsk. Among the participants of the seminars were health care organizers, neonatologists, geneticists, medical statisticians from all oblasts involved in the Program, Health Care Ministry officers and representatives of Prof. O. Tymchenko.
- The results of UABDP activities were presented at many international and all-Ukrainian scientific conferences, symposia and workshops:
- Annual Meeting of the World Alliance of Organizations for the Prevention of Birth Defects (May 27, 2000, Amsterdam, Netherlands) - "Implementations of Core Notions of the World Alliance of Organizations for the Prevention of Birth Defects in Ukraine", "The World Wide Web and Birth Defects Prevention".
- 1-st International Symposium on Prevention and Epidemiology of Congenital Malformations (Cardiff, Wales, UK - September 15, 2000) - "Birth Defects in Ukraine.
Surveillance-Care-Prevention. Introduction of International Standards".
- International Conference "Ukraine - NATO" (March 13, 2001, Lutsk, Volyn).
- Guidance Conference in Ternopil Medical Academy "Aspects of Organization of Students, Interns and Physicians Extracurricular work" (May 2001, Ternopil, Ukraine) - "Role of IBIS - International Birth Defects Information Systems in Medical Education as an integral part of independent work of physicians and interns in the Diagnosis and Medical Information Chair of Post-Diploma Education Department".
- 10-th International Congress of Human Genetics (May 15-19, 2001, Vienna, Austria) - "Approach to assessment of individual peculiarities of karyotype instability", "Web - Internet - BD Integrated Approach in Ukraine", "The Role of Neonatologists in Birth Defects Monitoring in Ukraine", "Implementation of The World Alliance for the Birth Defects Prevention in Ukraine".
Members of the Ukrainian delegation at the 10-th International
Congress of Human Genetics
- 1-st All-Ukrainian Conference of Neonatologists and Geneticists "Prevention, Diagnosis and Treatment of Birth Defects in Newborns", initiated at the Alliance for the Prevention of Birth Defects Workshop by Prof. O. Sulima and Prof. W. Wertelecki (April 17-18, 2001, Kyiv). Reports presented: "Approaches to Improvement of Diagnosis and Care of Children with Birth Defects", "Support of Alliances for the Prevention of Birth Defects", "The Role of Neonatologists in Birth Defects Monitoring in Ukraine", "Role of IBIS - International Birth Defects Information Systems in Birth Defects Prevention".
- All-Ukrainian Workshop of Pediatricians (June 7, 2001, Lutsk, Volyn). All-Ukrainian Workshop of Pediatricians appeal to committee preparing Ukrainian propositions concerning neural tube defects prevention with folic acid to be presented at the UN General Assembly Special Session on Children.
- International Conference "Folic Acid Impact: From Scientific Research to Health Care Practice" (June 13, 2001, Kyiv). There were presented reports of Prof. G. Oakley (USA), Prof. W. Wertelecki (USA) and Prof. O. Wolowyna.
UABDP Director Prof. W. Wertelecki with the conference
- Participation at the 28-th Annual Meeting of the International Clearinghouse for Birth Defects Monitoring Systems (ICBDMS). Appearance of the Ukrainian-American Birth Defects Program on the international scene confirmed its successful realization. The first Program presentation took place at the 1-st International Symposium on Prevention and Epidemiology of Congenital Malformations, held in Cardiff (Wales, UK) on September 2000. At that time the Program applied for participation in the International Clearinghouse. During the 28-th Annual Meeting of the ICBDMS, which took place on September 1-5, 2001 in Groningen (the Netherlands), Ukrainian-American Birth Defects Program presented its birth defects data ascertainment system and preliminary data for 2000 - first half of 2001. According to the unanimous decision of the ICBDMS Executive Committee the Ukrainian-American Birth Defects Program was officially accepted as an associated member of the International Clearinghouse for Birth Defects Monitoring Systems - the first country from other post Soviet Union countries.
- 1-st National Bioethics Congress (September 17-20, 2001, Kyiv). The following reports were presented: "Ethic Problems of Birth Defects Prevention", "Ethic Principles of Database Creation and Usage in Birth Defects Surveillance", "Ethic Problems of BD Children Dynamic Follow-up", "Pseudopositive and Pseudonegative Results of BD Prenatal Ultrasound Examination as an Ethic Problem", "Ethic Problems of Diagnosis and Treatment of Phenylketonuria", "Problems of Medical Genetics and Bioethics".
Ukrainian-American Birth Defects Program team among the Congress participants
- Seminar "Pre-Conception Prevention and Prenatal Diagnosis of Common Inherited Pathology" (October 11-12, 2001, Lviv) - "Neural Tube Defects in Rivne and Volyn Oblasts".
- Scientific-practical seminar devoted to problems of diagnosis and treatment of phenylketonuria (September 21, 2001, Kyiv). Co-organizers of the seminar were UABDP, Alliance for the Prevention of Birth Defects, "Ukraine-USA" Foundation, and Program for Appropriate Technology in Health (PATH). 42 physicians from 18 oblasts and Kyiv, 13 parents of PKU children from 10 cities, representatives of "Nutricia" and "Nutritek" Ukrainian companies took part in the discussion. As the result of the seminar the PKU Initiative Workgroup was created. Its tasks were to analyze the problem in Ukraine and elaborate propositions for the Health Care Ministry. Among the initiatives proposed at the seminar there was a proposition to improve physicians' skills concerning PKU and other enzymopathies diet therapy.
Parents sharing their experience of diet feeding
- International Symposium "UABDP: Achievements and Perspectives" (November 28, 2001, Kyiv). Co-organizers of the symposium were Health Care Ministry of Ukraine, Academy of Medical Science of Ukraine, UABDP, Alliance for the Prevention of Birth Defects, and United State Agency for International Development (USAID). The representatives of the international organizations and national experts took part in the symposium work. The main decision of the symposium was the creation of initiative group, which had to promote implementation of the Primary Birth Defects Prevention with Folic Acid Program in Ukraine.
- International Scientific Conference "Library and Informational Services" (October 11, 2001, Kyiv). Title of the report: "Informational Services Proposed to Medical Genetics and Birth Defects Specialists in the Ukrainian-American Birth Defects Program OMNI-Center".
- 8-th Publisher Forum (September 20-23, 2001), Lviv. Goal: spreading information about UABDP and its OMNI-Center Network (information about OMNI and Program was included in Forum catalogue). OMNI-Center Network was supplied with new materials. New contacts were established with medical literature publishers. 25 new publications on pediatrics, gynecology, psychology, medical ecology, medical dictionaries were received from "Sabre-Svitlo" Foundation.
- September 29 - October 1, 2002 the UABDP Seminar "Monitoring, Research and Prevention of Birth Defects" took place in Lviv. During the seminar there were delivered lectures on epidemiology, methods and ways of birth defects surveillance realization. The seminar was held with the participation of Prof. W. Wertelecki (USA), Prof. L. Edmonds (USA), and Prof. L. Sever (USA). There were present 103 participants including chief assistants of Health Care Departments from 8 oblasts, representatives of departments from 8 medical universities, geneticists from 11 oblasts, neonatologists, Chief Neonatologist of Health Care Ministry of Ukraine Prof. O. Sulima, Chief Medical Geneticist of Health Care Ministry of Ukraine Prof. O. Hnateyko.
Prof. L. Edmonds (left) and Prof. L. Sever during the seminar|
- Participation at the 3-rd Congress of the Ukrainian Medical Geneticists,
October 2-4, 2002 (Lviv). The following reports were made during the Congress: "IBIS - International Birth Defects Information Systems", "Prevalence of Spina Bifida and Anencephaly in Rivne and Volyn Oblasts of Ukraine in 2000-2001", "Prevalence of Down syndrome in Western Ukraine in 2000-2002".