1st Central and Eastern European Summit on Preconception Health and Prevention of Birth Defects
Summit Executive Committee
Csaba Siffel (Conference Chair)
Hani Atrash (USA)
Adolfo Correa (USA)
Wladimir Wertelecki (USA)
Mary-Elizabeth Reeve (USA)
Pierre Delvoye (Belgium)
Ysbrand Poortman (The Netherlands)
Elena Szabova (Slovakia)
Yuriy Korzhynskyy (Ukraine)
Jiri Horacek (Czech Republic)
Local Organizing Committee (Hungary)
Melinda Csaky-Szunyogh (Chair of the LOC)
Coleen Boyle (USA)
Joe Mulinare (USA)
Pierpaolo Mastroiacovo (Italy)
Catherine de Vigan (France)
Andrew Czeizel (Hungary)
Janos Rigo (Hungary)
Rumen Stefanov (Bulgaria)
Anna Latos-Bielenska (Poland)
Veronique Ruiz (The Netherlands)
Leo ten Kate (The Netherlands)
Tamás Székely, Minister of Health, Republic of Hungary
It was my real pleasure to accept to be the Main Patron of the 1st Central and
Eastern European Summit on Preconception Health and Prevention of Birth
Defects, simply because I see life as a non-repeatable miracle.
As a physician and also as a minister of health I pledged to protect and guard life to
the best of my knowledge.
The long-term, ”Children, our common treasure” National Infant and Child Health
Program builds on the premise that the period from conception to 18 years of age
provides the basis of physical and mental health in later stages of life, as well as
the basis for opportunities for health protection and disease prevention – since
”losses” in early ages of life cannot be compensated later. In our nation, in the
Republic of Hungary, all children have the right to get protection and care from
their family, the government and the society, which are necessary for their proper
physical, mental, and moral development.
I believe that the conference will contribute to the protection and augmentation of
opportunities for our children’s health – our common treasure.
Wishing you a successful meeting.
Ferenc Falus, Chief Medical Officer, Republic of Hungary
In Hungary, out of 100,000 births, about 5,500 are born with congenital anomalies.
Many of the frequent anomalies are preventable but their prevalence has not
decreased during the last 10 years. Large proportion of adverse pregnancy
outcomes could be prevented if proper information and screening would be offered
for women of childbearing age. I found the conference, which talks about the
preconception health and prevention of birth defects, highly important. The
program builds on the dialogue in Central and Eastern European level and tries to
find ways to reach women of childbearing age. The conference will provide a
platform to review possibilities in preconception health and health care, and
surveillance programs of birth defects in the Central and Eastern European region.
I am honored and gladly accepted to be the patron of the conference.
Dear Friends and Colleagues,
It is my real pleasure to welcome you and introduce the program of the 1st Central and
Eastern European Summit on Preconception Health and Prevention of Birth Defects in
Budapest, Hungary, August 27-30.
It is a natural expectation of people to have a healthy baby and a healthy mother. National
goals have been set to reduce maternal and infant morbidity and mortality in several
countries. In Central and Eastern Europe the situation is not so bright: infant mortality and
morbidity is higher in the region compared with Western Europe. Even in developed countries,
improvement trends in pregnancy outcomes are declining and in some instances have
reversed, which may be attributable to failures of preconceptional interventions to reduce or
control risk factors that contribute to adverse pregnancy outcomes including birth defects.
By implementation of pre- and periconceptional health enhancing programs and care such as
health promotions, interventions, vaccinations, screening, and counseling, we can
significantly improve pregnancy outcomes including lowering rates of birth defects.
The summit will provide a forum to exchange information and ideas, identify common
challenges, priorities, and strategies in preconception health and health care, birth defects
surveillance, research, and prevention. Ultimately, our work is about health impact.
The Research and Prevention for Families Foundation in Hungary in close collaboration with
the Hungarian Congenital Abnormality Registry, National Centre for Healthcare Audit and
Inspection, and the sponsorship of the National Center on Birth Defects and Developmental
Disabilities at the U.S. Centers for Disease Control and Prevention, the March of Dimes
Foundation, the Birth Defects Program at the University of South Alabama, and the Hungarian
Ministry of Health, the Office of the Chief Medical Officer of the National Public Health and
Medical Officer Service, and the National Institute of Child Health in Hungary made the
summit possible. Several national and international organizations and institutes joined as a
Special thanks to the Executive Committee, which worked hard together with the Advisory
and Local Organizing Committees and Diamond Congress to help giving “birth” of the summit,
which faced many “risks” during an “unusual pregnancy”.
We are pleased to have a rich program with distinguished speakers agreed to speak at the
plenary and breakout sessions, where extensive discussions will be encouraged. Poster
sessions will also be held during the summit. We hope that you actively participate, and leave
Budapest better informed and prepared to confront the many challenges before you.
I wish a very fruitful and successful summit.
To provide a platform for review, analysis and discussion of the promotion of women’s health
before, during and beyond pregnancy, and the role of preconception health and health care in
the prevention of birth defects in the Central and Eastern European region.
To review current demographics and trends of reproductive outcomes, state of
preconception health and health care, and surveillance programs of birth defects in
Central and Eastern European countries
To promote prevention of birth defects by changing the prevention paradigm to include
a focus on improving women’s preconception health and health care
To improve communication among participating countries through increased
information sharing and collaboration for future partnerships
To identify strategies and specific action steps for improving preconception health and
for strengthening birth defects surveillance, research and prevention, utilizing the
European and U.S. experiences to date.
Elsevier Science Publisher
Elsevier is the leading global publisher of medical journals, books and electronic products.
Our imprints include Saunders, Churchill Livingstone and Mosby. Visit the Elsevier stand
where we will be displaying our full range of women's health and paediatric related products.
Sejtbank is the representative of Cryo-Save, the largest stem cell bank in Europe. Enjoying a
high level of acknowledgement and an excellent reputation in stem cell science all over the
world, the institute processes and retains the stem cells obtained from umbilical cord blood in
its central laboratory in Belgium. Long-term and safe storage takes place according to the
highest quality requirements and international regulations.
Organizers, Sponsors and Partners
Research and Prevention for Families Foundation, Hungary
The Research and Prevention for Families Foundation (RPFF) is a national, non-profit and public
benefit organization registered in Hungary. The mission of the RPFF is to promote healthy families and
healthy babies through scientific research, prevention programs, habilitation, and family planning.
Goals include to carry out surveys and research to understand the causes of genetic diseases, birth
defects, and respiratory diseases; evaluate the role and effect of environmental factors and
medications for birth defects with experts and scientists; promote health educations and trainings for
family planning, prevention and treatment of diseases; establish and operate a Teratology (Pregnancy)
Information Service; organize expert meetings and conferences; establish connections and collaborate
with scientists, and non-profit and scientific organizations in Hungary and internationally; publish
informational and scientific materials related to the mission
National Centre for Healthcare Audit and Improvement, Hungary
Hungarian Congenital Abnormality Registry
The National Centre for Healthcare Audit and Improvement ensures that standard level medical
services could be obtained by citizens on equal terms, assesses the relationship between medical
systems with economic conditions and controls the quality of health care (with a special attention to
non-contagious diseases, i.e. congenital abnormalities)
The mission of the Hungarian Congenital Abnormality Registry (HCAR) is to prevent birth defects
through surveillance and research. The HCAR activities include: to assess the frequency of congenital
abnormalities; to establish the number of handicapped persons with birth defects; to promote primary
prevention of birth defects; to provide materials for scientific research to study risk of congenial
anomalies; and to enable international cooperation in the field.
Centers for Disease Control and Prevention (CDC), USA
National Center on Birth Defects and Developmental Disabilities
CDC’s Vision for the 21st Century: “Healthy People in a Healthy World—Through Prevention”.
Collaborating to create the expertise, information, and tools that people and communities need to
protect their health – through health promotion, prevention of disease, injury and disability, and
preparedness for new threats.
The National Center on Birth Defects and Developmental Disabilities (NCBDDD) promotes the health
of babies, children, and adults, and enhances the potential for full, productive living.
The NCBDDD’s work includes identifying the causes of and preventing birth defects and
developmental disabilities, helping children to develop and reach their full potential, and promoting
health and well-being among people of all ages with disabilities.
March of Dimes, USA
March of Dimes is the leading U.S. nonprofit organization for pregnancy and infant health. Our mission
is to improve the health of babies by preventing birth defects, premature birth, and infant mortality.
The March of Dimes carries out this mission through research, community services, education and
advocacy. Our teams of researchers, volunteers, educators, outreach workers and advocates work
together throughout the U. S. to insure that babies are born healthy. March of Dimes Global Programs
extends this mission worldwide through partnerships with international organizations, academic
medical centers, NGOs and governmental organizations. Global Programs activities emphasize costsharing
to ensure partnerships that build capacity in our program countries.
National Public Health and Medical Officer Service, Hungary
Office of the Chief Medical Officer
The National Public Health and Medical Officer Service is responsible for the direction, coordination
and supervision of the public health (environment, settlement, food safety, nutrition, child, youth,
radiohygiene, chemical safety), epidemiology, health development (health protection, health
education and health maintenance), health care operation activities, and the supervision of the health
care supply in Hungary. The Office is directed by the Chief Medical Officer who fulfils his tasks under
the direct supervision of the Minister of Health. The central organization of the National Public Health
and Medical Officer Service is the Office of the Chief Medical Officer. The Office fulfils the various
tasks and activities via its national, regional and small regional institutions.
National Institute of Child Health, Hungary
The duties of the National Institute of Child Health (NICH) include all fields of health of Hungarian
children, as well as data collection, data processing, professional management, scientific research,
methodological, organizational, coordinational activities concerning children's health protection and
The NICH elaborates proposals to develop a health care system that meets children's need; takes part
in preparing, publishing and enforcing methodological guidelines and expert opinions; as well as
participates in the implementation of new methods in training and modernizing child health services
in order to improve the quality of the health care system.
The NICH handles prominently the prevention activity of child health care, the prevention of diseases
determining the current public health status and the development of prevention methods and
practices from the preconceptional stage to the end of the childhood.
The NICH fulfils its duties with respect to the environmental and socio-cultural factors determining the
health of children, carries out its activity with social-pediatric attitude cooperating with other
professions, institutes of similar profile and organizations working in the field of children's protection.
University of South Alabama, USA
Birth Defects Program
The goals of the Alabama Birth Defects Surveillance and Prevention Program are to establish and
maintain a birth defects registry, develop and implement prevention programs, and improve access
for children with birth defects to comprehensive, community-based, family centered care.
The Program is unique in that it is academic based and utilizes registered nurses to conduct active
case ascertainment of infants with birth defects in birthing facilities and specialty clinics. These same
nurses act as a resource to their communities, providing information to health professionals, patients
and their families. The Alabama Birth Defects Surveillance and Prevention Program, working together
with its many partners and sponsors, hopes to improve the health of Alabama’s children and beyond.
The "International Charitable Fund OMNI-Net for Children" (OMNI-Net) links medical and non-medical
professionals with parents advocating the prevention of causes and amelioration of the impact of
malformation and developmental disorders. OMNI-Net centers and teams are an integral component
of leading regional medical centers caring for mother's and children in Ukraine. OMNI-Net goal is to
enhance programs through resource sharing, data collection, promotion of parental organizations,
tele-medicine consultations and advocacy of better care of orphaned infants and children. Registered
in Ukraine as an international not-for-profit organization, OMNI-Net offers an infrastructure for
regional, national and international collaborations.
International Clearinghouse for Birth Defects Surveillance and Research
The International Clearinghouse for Birth Defects Surveillance and Research (ICBDSR) is a voluntary
non profit International Organization affiliated with WHO. The Organization brings together birth defect
surveillance and research programmes from around the world with the aim of investigating and
preventing birth defects and lessening the impact of their consequences.
The mission of the International Clearinghouse of Birth Defects Surveillance and Research is to
conduct worldwide surveillance and research into the occurrence and possible causes of Birth Defects
with the aim of preventing them and decreasing their consequences.
World Alliance of Organizations for Prevention and Treatment of Genetic
and Congenital Conditions (WAO)
The WAO is dedicated to the prevention, cure and amelioration of genetic and congenital conditions
and strives to decrease the gap between new scientific discoveries and their practical application in
health care and prevention. The WAO focuses on perinatal healthcare especially in developing
countries as over 90% of the children of the world are born there. Genetic and congenital conditions
are a leading cause of foetal and infant mortality and of developmental and intellectual disabilities in
those who survive.
A European network of population-based registries for the epidemiologic surveillance of congenital
anomalies started in 1979. The objectives of EUROCAT:
To provide essential epidemiologic information on congenital anomalies in Europe.
To facilitate the early warning of new teratogenic exposures.
To evaluate the effectiveness of primary prevention.
To assess the impact of developments in prenatal screening.
To act as an information and resource center for the population, health professionals and
managers regarding clusters or exposures or risk factors of concern.
To provide a ready collaborative network and infrastructure for research related to the causes
and prevention of congenital anomalies and the treatment and care of affected children
To act as a catalyst for the setting up of registries throughout Europe collecting comparable,
International Federation for Spina Bifida and Hydrocephalus
The International Federation for Spina Bifida and Hydrocephalus (IF) is the world-wide umbrella
organization (INGO) for Spina Bifida and Hydrocephalus organizations. It was created in 1979 by
national organizations of people with these impairments and their parents. Today IF's membership
consists of 32 regional and national umbrella organizations for Spina Bifida and Hydrocephalus.
Further, IF has an intense contact with regional and national organizations in over 50 countries,
spread over five continents.
IF aims to disseminate information and expertise throughout the world to families, individuals,
professionals and volunteers involved in the Hydrocephalus and Spina Bifida field.
The mission of IF is to improve the quality of life of people with Spina Bifida and Hydrocephalus
throughout the world and to decrease the prevalence of Spina Bifida and Hydrocephalus by primary
The Central & Eastern European Genetic Network (CEEGN)
CEEGN is a coalition of patients, family support groups and individuals, working together with
scientists and industry to support people with common and rare genetic and congenital conditions and
their families in countries of Central and Eastern Europe.
CEEGN aims to raise awareness of the needs of these people and organizations, and to promote
medical genetic services, research, technologies and access to medical treatment in order to alleviate
the burden of genetic conditions for individuals, families and communities, and to improve the quality
of life of patients and their families.
CEEGN is focused on understanding the common needs of patients with genetic diseases and their
families in order to improve the medical care these patients receive consistent with the level received
in other EU countries.
CEEGN welcomes collaboration with organizations, institutions and societies which can contribute to
achieving it's goals.
CEEGN is the member of the European Genetic Alliances Network (EGAN).
Wednesday, August 27, 2008
14:00 Registration starts
19:00 Welcome cocktail
Thursday, August 28, 2008
OPENING and WELCOME – Panorama Room
Melinda Medgyaszai, Secretary of State for Health Policy – Hungary
Ferenc Falus, Chief Medical Officer – Hungary
Csaba Siffel, Conference Chair
PLENARY 1 - DEFINING THE PROBLEM AND NEED – Panorama Room
Moderators: Csaba Siffel – USA
Pierpaolo Mastroiacovo – Italy
Changing the Prevention Paradigm: The Role of Preconception Health
and Health Care in the Prevention of Birth Defects
Hani Atrash – USA
Birth Defects in the Central and Eastern European Region: Morbidity,
Epidemiology, Current Activities
Anna Latos-Bielenska – Poland
Wladimir Wertelecki – USA
Break - Foyer of Uranus Room
PLENARY 2A - PRECONCEPTION CARE FROM SCIENCE TO PRACTICE:
INFORMATION FOR ACTION – Panorama Room
Moderators: Alison Johnson – USA
Andrew Czeizel – Hungary
Genetic Risk Assessment in Preconception Care
Leo ten Kate – The Netherlands
Preconception Health Promotion: Means and Constraints Analysis
Pierre Delvoye – Belgium
What are the Challenges and Knowledge Gaps for Implementing
Merry-K. Moos – USA
PLENARY 2B - BIRTH DEFECTS FROM SURVEILLANCE TO PREVENTION:
CHALLENGES AND OPPORTUNITIES – Panorama Room
Moderators: Anna Latos-Bielenska – Poland
Adolfo Correa – USA
Key Issues to Have a Good Birth Defects Surveillance and Research Program
in the Early 2000s
Pierpaolo Mastroiacovo – Italy
A Population Health Perspective on Birth Defects Research and Prevention
Esther Sumartojo – USA
Public Health Challenges in Central and Eastern Europe
Zoltan Voko – Hungary
Lunch – Jupiter Restaurant
POSTER SESSION I – Uranus Room
P - I/1 Survey of Maternal Phenylketonuria (PKU) as a Teratogen
Nataliya Afanasyeva – Ukraine
P - I/2 Epidemiology of Urinary System Malformations in Newborns
Malgorzata Baumert – Poland
P - I/3 Prenatal Ultrasound to Detect Effects of in Utero Alcohol Exposure
Christina Chambers – USA
P - I/4 Spina Bifida Prevalence Among Children in Ten Regions of the United States
Adolfo Correa – USA
P - I/5 Musculoskeletal Defects in Children of 43 Mothers Who Attempted Suicide
with Nitrazepam during Pregnancy
Janos Gidai – Hungary
Antenatal Screening for Fetal Abnormalities in Hungary
Janos Szabo – Hungary
Is it Time to Change from Classical Karyotyping to Rapid Testing in Prenatal
Karolina Pesz – Poland
Practical Aspects of Down's Syndrome Screening – The General Introduction
of Combined Test
Eszter Skriba – Hungary
Genetic Counseling as a Key for Birth Defects Prevention
Habiba Chaabouni-Bouhamed – Tunisia
Polish Collection of Chromosome Translocations
Alina T. Midro – Poland
BREAKOUT 8 - OMNI-NET BIRTH DEFECTS PREVENTION NETWORK
IN UKRAINE AND BEYOND – Venus Room
Moderators: Wladimir Wertelecki – USA
Pierpaolo Mastroiacovo – Italy
Linking Birth Defects Surveillance with Early Intervention Services
Svitlana Bohatyrchuk-Kryvko – Ukraine
Expanding a Population Birth Defects Surveillance Program by a Pregnancy
Registry in Rivne Ukraine
Viktor Kovalyov – Ukraine
Infant Mortality – Ukraine vs. Alabama
Yuriy Korzhynskyy – Ukraine
Cyberspace and Birth Defects (BD) Programs in Ukraine
Wladimir Wertelecki – USA
Banquet on the Europa Boat
Saturday, August 30, 2008
SMALL GROUP DISCUSSIONS
During small group discussions participants will discuss:
what countries of the region should do to promote preconception health
and prevention of birth defects, how to monitor improvements, and what
networks, communications and resources are needed;
the current situation in countries of the region; and
what needs to be done (recommendations, guidelines, implementations).
Facilitators and recorders will assist to have a fruitful discussion. All summit
attendees are encouraged to actively participate in one of the small group
HEALTH PROMOTION POLICIES AND STRATEGIES
Facilitators: Hani Atrash, Eduardo Castilla, Merry-K. Moos
Recorder: A person identified from the CEE region
MOVING BEYOND PREGNANCY – MONITORING IMPROVEMENTS
Facilitators: Adolfo Correa, Pierpaolo Mastroiacovo, Joseph Mulinare
Recorder: A person identified from the CEE region
REGIONAL AND NATIONAL NETWORKS – COMMUNICATIONS –
Facilitators: Mary-Elizabeth Reeve, Wladimir Wertelecki, Pierre Delvoye
Recorder: A person identified from the CEE region