Programs and conferences around the world
Over the past fifteen years, March of Dimes Global Programs has overseen a rapidly growing portfolio of productive, cost-effective partnerships and programs worldwide. Activities emphasize cost sharing to ensure partnerships of equals and are designed to build lasting capacity in our target communities. Projects and accomplishments for the years 1998-2014 are presented below.
Preterm Birth and Perinatal Events
March of Dimes Foundation and International Federation of Gynecology and Obstetrics (FIGO) Collaboration
In 2013, March of Dimes and FIGO signed a memorandum of understanding to pool activities and resources of March of Dimes with activities and infrastructure of FIGO, in order to help reduce worldwide the rates of preterm birth. Areas of collaboration, once ratified by the FIGO Executive Board in early July 2014, will include:
• Jointly increase visibility for preterm birth discovery and prevention at professional meetings sponsored by each organization, and through joint advocacy and media.
• Presence of ex-officio representatives or observers on committees of each other’s organization in areas related to prematurity.
• Utilize existing March of Dimes personnel, experience and resources to assist and in collaboration with ACOG, advances FIGO endeavors underway in South America.
• Establish a high-income country (HIC) network of professional organizations, governmental and non-governmental organizations and academic centers. Use this network to learn what practices have worked in high-income countries to lower preterm birth and Caesarean-section (C-section) rates worldwide.
• Apply the findings from the high-income country network to middle-income countries, and where feasible, needs of low-income country. Some advancing middle income countries (MIC) and other lower income countries (LIC) can be predicted to experience similar problems in the future.
• Jointly advance worldwide research into causes of premature birth
• Jointly foster efforts to reduce frequency of multiple embryo transfer in Assisted Reproductive Techniques, but take into account patient autonomy, professional pressures, and the unintended consequences of mandated registries, limited insurance or governmental resources and impact of scientific progress on practice advances.
March of Dimes is the major funder of this collaboration and has already begun supporting FIGO at various levels. For example, March of Dimes is sponsoring a symposium, “Discovering Genetic Causes and Preventing Preterm Birth Through New Research Directions” at the 2014 FIGO regional conference in Sri Lanka in October/November 2014, organized jointly by FIGO, the South Asia Federation of Obstetrics and Gynaecology (SAFOG) and Sri Lanka College of Obstetricians & Gynaecologists (SLCOG). WHO is a participating organization for this conference.
Coalition to Address the Global Burden of Preterm Birth
In September 2013, March of Dimes, in collaboration with the Global Alliance to Prevent Prematurity and Stillbirth, the Eunice Kennedy Shriver National Institute of Child Health and Human Development, the World Health Organization and the Bill & Melinda Gates Foundation entered into an agreement to create the Coalition to Address the Global Burden of Preterm Birth. The coalition aims to accelerate the discovery of advances that can elucidate the causes of preterm births through increased scientific knowledge, devise therapies to prevent preterm birth by maternal treatment, evaluate promising interventions and available approaches for minimizing the burden of preterm birth and its complications for those most in need in developing countries, and improve outcomes of infants born preterm worldwide.
MOD-Pan American Health Organization (PAHO) Economic Costs of Preterm Birth in the Latin America and Caribbean (LAC) Region
The March of Dimes is partnering with PAHO’s Latinoamericano de Perinatología Salud de la Mujer y Reproductiva (CLAP/PAHO) in Uruguay to estimate the economic costs of preterm birth in the LAC region. Updated estimates of the national economic costs of preterm birth are essential to informing WHO actions, policy at national levels and funding streams, which is critically needed as the only available estimates to date remain those of the U.S. Institute of Medicine published in 2006. The findings of this project will be published and widely disseminated and will provide a model for similar analyses in other regions of the world. A PAHO-sponsored technical meeting of LAC countries and regional partners in the government and NGO sectors will be held to develop a coherent regional strategy.
Birth Defects and Genetic Disorders
Global Estimates on Birth Defects
As a follow-up to the 2006 March of Dimes Global Report on Birth Defects, the aim of this project is to generate updated country-level estimates of the incidence of major birth defects worldwide and calculate the global burden of newborn mortality and disability resulting from this. Updated estimates are essential to inform WHO policy, policy at country levels and funding streams. The three original authors of the 2006 March of Dimes report will work with partners from a number of organizations including the London School of Hygiene and Tropical Medicine, CDC, PHG Foundation, International Clearinghouse for Birth Defects Surveillance and Research to generate the estimates. The results will be published in a high-visibility journal before the World Health Assembly in May 2015. The findings will be vigorously publicized to refocus attention on the 2010 WHA Resolution on Birth Defects and the need to strengthen prevention and care in LMICs. A policy report on implications and recommendations for prevention and care is also being considered for publication in late 2015.
March of Dimes and Centers for Disease Control and Prevention (CDC) Partnership to Strengthen Surveillance, Analysis and Reporting on Birth Defects in LMIC
Global Programs is partnering with the International Clearinghouse for Birth Defects Surveillance and Research (ICBDSR) and the CDC’s National Center for Birth Defects and Developmental Disabilities to provide technical expertise to low- and middle-income countries to plan, develop and implement birth defects surveillance programs and conduct priority activities to enhance in-country/in-region capacity for birth defects surveillance and prevention. Activities include strengthening and dissemination of a birth defects surveillance toolkit with CDC and ICBDSR to assist low-, middle- and high-income countries in developing and implementing or strengthening existing surveillance activities and improving standardization of data collection. Other activities include conducting and organizing trainings for Ministries of Health and others interested in developing or strengthening birth defects surveillance programs; developing tools in collaboration with CDC to be used to generate information rapidly and efficiently for policy decisions (e.g., population estimates for attributable risks for congenital conditions); and maintaining an international birth defects database that includes data from low-, middle- and high-income countries.
Newborn Screening in the LAC Region
MOD is collaborating with CLAP/PAHO, in addition, to conduct a literature review and survey of existing programs to determine the state of newborn screening in the region’s 46 nations and territories. There are variations in the scope and existence of newborn screening programs and it is important to identify and publish the overall status to allow policy makers to promote best practices throughout the region. This regional effort of Global Programs and CLAP/PAHO to evaluate newborn screening and to advocate with regional partners is the first of its kind and will be a model for advancing newborn screening in other regions of the world.
Collaboration for Spina Bifida and Hydrocephalus Prevention and Care
In April 2014, CDC organized a partner-engagement meeting to improve collaboration among various organizations, including WHO, involved in research, care and prevention of spina bifida and hydrocephalus. March of Dimes participated in this meeting and serves on the steering committee that will facilitate development of an international consortium of stakeholders to advance global prevention, care and research of spina bifida and hydrocephalus.
Reproductive, Maternal, Newborn and Child Health (RMNCH) and Nutrition
Survive & Thrive Global Development Alliance
Survive & Thrive is a public-private partnership initiated by the USAID to engage U.S. pediatric, obstetric/gynecologic, and midwifery membership organizations with the private sector and the U.S. Government in the strengthening of reproductive, maternal, newborn and child health (RMNCH) programs globally. Survive & Thrive collaborates with international and national professional associations and global health scholars in accomplishing its mission. Global Programs in its role as a steering committee member of Survive & Thrive contributes to the Alliance by facilitating linkages to RMNCH experts in LMIC and by providing technical knowledge and state-of-the-art education materials to strengthen prevention of birth defects, preterm birth and infant mortality.
The Flour Fortification Initiative
The Flour Fortification Initiative (FFI) is a network of industry, governments and NGOs committed to expanding national and regional fortification of flour with folic acid and other micronutrients. As a member of the Flour Fortification Initiative Leader's Group, Global Programs shares technical advice and participates in FFI technical meetings. Global Programs’ current focus is assisting FFI in expanding folic acid fortification in Central America.
RMNCH and Nutrition
March of Dimes – Global Network for Maternal and Infant Health (GNMIH)
The March of Dimes has long recognized the need for better communication and coordination among the many organizations working to improve the health of women, mothers and babies worldwide. In response, Global Programs in 2008 established the GNMIH, a global network of interlinked mission alliances whose goal is to reduce mortality and disability from birth defects and preterm birth in lower-income countries. The core philosophy of GNMIH is one of communication and collaboration among all developing country expert members, from the earliest stages of proposal development through the conduct and evaluation of Network projects and publication of research findings. This philosophic approach is essential because it is only through strategically managed networks like GNMIH–where the locus of power and decision making resides with the developing country partners and communication and interaction among the partners is vigorous–that their development and core capacities can be truly developed and sustained. The GNMIH currently comprises three academic research centers located in China, Lebanon and the Philippines. MOD is the principal funder. Each Center informs and collaborates with its respective WHO Regional Office.
The three GNMIH sites have developed and implemented projects in four key areas: research focused on surveillance for birth defects and preterm birth; professional training to improve diagnosis and care: public education to raise awareness about birth defects and preterm birth; and youth activities, involving students and young health professionals in public education. By working together in the development of these projects the project PIs from each site have shared ideas and experience of what works in the process of improving surveillance, professional training and public education for care and prevention of birth defects and preterm birth.
Examples of March of Dimes supported GNMIH activities include: 1) China: A Maternal Infant Health Network in China was developed in collaboration with Peking University to collect and analyze preterm birth data. Currently, 155 MCH hospitals in 23 provinces are part of this network, collecting data on 1.1 million births; 2) Philippines: 220 student leaders from 73 academic institutions have joined the Philippines Youth Volunteer Leadership Program. Activities include school-based peer counseling and advocacy for prevention of prematurity and birth defects; and 3) Lebanon: 8,000 11th and 12th graders in 41 schools received preconception health education in 2012. Plans for expansion of this health education program to university level students are underway.
Discussions are underway to add new centers to the network in 2014, particularly in Sub-Saharan Africa.
March of Dimes – American University of Beirut Program (AUB) to Improve Preconception, Prenatal and Neonatal Health in Lebanon and Other Countries of the Middle East
The goal of this Global Programs – AUB partnership has been to expand the existing AUB-based National Collaborative Perinatal Neonatal Network (NCPNN) surveillance system of preconception, maternal, newborn and child health indicators and outcomes to rural/semi-rural hospitals in underserved areas of Lebanon. The project will also develop a standard questionnaire for use by all NCPNN member institutions and train local health personnel in standardized methods of data collection. NCPNN is also actively seeking to extend its network to neighboring countries in the Eastern Mediterranean Region. As a sign of its success, the Jordanian government held a meeting in Amman in 2010 with over eight countries in the region attending with the goal of expanding the NCPNN model regionally.
March of Dimes – Dartmouth Medical School Alliance to Improve Maternal and Neonatal Health in Kosovo
There are known interventions, which if fully implemented, can reduce the rates of stillbirth and early neonatal deaths in middle-income countries. March of Dimes has been collaborating with Dartmouth Medical School on a prospective pilot study of late stillbirths and early neonatal deaths occurring at the University Clinical Centers of Kosovo in Prishtina. The goal of the study is to identify quality improvements to health care delivery to women during labor and delivery, and to newborns. The study is being carried out through a local NGO called, the Kosovo Foundation for Healthy Mothers and Babies. March of Dimes is also partnering with the Kosovo Foundation on the translation, adaptation and dissemination of health information available on the March of Dimes website.
Preterm Birth and Perinatal Events
2012-2004. International Preterm Birth Collaborative (PREBIC) Partnership
The March of Dimes - PREBIC partnership was established in 2004 to improve pregnancy and birth outcomes and optimize infant health and development to lessen the risk of childhood, adolescent and adult diseases. It accomplishes these aims through supporting a broad range of activities, including world-wide investigation into the causes and prevention of preterm birth and low birth weight, as well as evaluation of risk factors and biomarkers for identifying patients at risk for these conditions. Based on this knowledge, PREBIC also develops and seeks to implement intervention strategies for preventing and managing high-risk pregnancies. PREBIC meets annually at WHO Headquarters and conducts sub-meetings in conjunction with other international meetings.
2006 - 2004. March of Dimes - Magee Womancare International Project to Improve Prenatal Health in Eastern Europe
Global Programs partnered with Magee Womancare International to develop and implement prenatal health training programs in Russia, Belarus, Ukraine and Kazakhstan. Clinicians working in the field of women's health attended a prenatal health workshop in Moscow in March 2005; they then returned to their respective countries to implement prenatal health education programs for their patients and communities. In December 2005, Magee Womancare International replicated the workshop in Petropavlovsk, Russia. Following this workshop, March of Dimes collaborated with Magee Womancare International to create a preconception and prenatal health education program for community leaders in the Russian Far East. A workshop for community leaders was held in Vladivostok in May 2006. Participants subsequently designed and implemented several community-based projects throughout the region to improve preconception and prenatal health.
2005-1999. March of Dimes - de Waal Foundation Partnership for Prenatal Health Education in Latin America
In 1999, Global Programs established a partnership with the Netherlands-based de Waal Foundation to develop and deliver a prenatal health education program in Latin America. Training was targeted to health and education professionals and to community leaders by providing prenatal health education materials and technical support. The program, called Proyecto PreNatal, was initiated in Ecuador in 2000 and expanded to Honduras, El Salvador, Panama, Venezuela, Peru and Bolivia. Within each country, a program office coordinates prenatal health education through a network of participating local NGOs.
Birth Defects and Genetic Disorders
2011 - 2001. MOD-EURO-PAHO-UNICEF-ARC Alliance for Eradication of Congenital Rubella Syndrome (CRS)
March of Dimes supported purchase of the rubella vaccine through UNICEF for use alone and as a co-vaccine in measles eradication programs in selected WHO regions including Latin America and Eastern Europe. With the support of WHO, the rubella immunization became routine in much of the world within the next decade.
2009 - 2008. March of Dimes - One H.E.A.R.T. Birth Defects Prevention Project in the Tibet Autonomous Region (TAR)
Prior to 2008, the toll of birth defects in the TAR was undocumented. As a result, public health awareness about birth defects was low in the population and the availability of medical care services for care and prevention was limited. This two-year project––headed by One H.E.A.R.T., in collaboration with the University of Utah, Department of Human Genetics; Ministry of Health, China; National Registry of Birth Defects of China (NRBDC); Lhasa Prefecture Health Bureau and Lhasa Prefecture Women's Federation––established a birth defects surveillance and monitoring system in Lhasa Prefecture. In addition, the project developed curricula on care and prevention of birth defects for medical care providers and the public through the establishment of a local advisory council of key stakeholders from academia, government, NGOs and the public. The model developed is applicable to highly-resource constrained, rural populations in other countries.
2009-1998. March of Dimes - World Alliance of Organizations for the Prevention and Treatment of Genetic and Congenital Conditions (WAO) Partnership to Promote Research and Strengthen Networks of Parent-Patient Groups
In 1998, March of Dimes co-founded the World Alliance of Organizations for the Prevention and Treatment of Genetic and Congenital Conditions (WAO) to assess the status of medical genetic services in lower-income countries and provide recommendations for research, strengthening support organizations and programs at the primary care level to promote the care and prevention of birth defects. WAO reports included the 1999 WHO document, Services for the Prevention and Management of Genetic Disorders and Birth Defects in Developing Countries.
2008 - 2007. March of Dimes - Peking University Alliance to Establish a National Birth Defects Registry in the People’s Republic of China
Birth defects are of major concern to health policy makers in China. Approximately 1.2 million babies are born with serious birth defects annually in China, representing six percent of total births. There is a significant variation in the birth prevalence of birth defects across China, but the extent and magnitude of these differences are unclear due to the lack of a centralized, systematic means of data collection and analysis. This two-year project established a birth defects registry in China which has provided data allowing for a better understanding of these variations and their causes. Because the majority of births take place in China’s national network of Maternal and Child Health Hospitals, the surveillance system is hospital-based. Sixty hospitals in ten provinces and municipalities (Beijing, Shanghai, Zhejiang, Hunan, Jiangsu, Guangdong, Shanxi, Anhui, Hubei, and Liaoning) were enrolled in the registry network. The longer-term goal of the project will be to share the model of the registry system with other developing countries and, through this, to contribute to a worldwide network of national registries collecting harmonized data on the prevalence, etiology and care and prevention of birth defects.
2008 - 2001. March of Dimes – European Genetics Foundation Alliance (EGF) for Genetics Education of European and Western Mediterranean Health Care Professionals
Global Programs developed a partnership with the European Genetics Foundation Alliance (EGF) in support of an annual course to train genetic counselors from around the world at the European School of Genetic Medicine in Bologna, Italy. It also worked with EGF supporting efforts of the European Union to create a Euro-Mediterranean network whose purpose was to train health professionals from the Eastern Mediterranean region and share scientific expertise and resources aimed at improving health care through strengthening genetic medicine and cancer prevention.
2005 - 2002. March of Dimes - South African Inherited Disorder Association (SAIDA) Partnership for the Genetics Education of Health Care Professionals in South Africa
The goal of this three-year March of Dimes – SAIDA partnership was to develop a Medical Genetics Education Program for registered nursing staff in South Africa. The core of this program was a birth defects curriculum developed as part of the South African Perinatal Education Programme Series. The curriculum was taught in several provinces in South Africa. In 2005, SAIDA also produced a CD-ROM version of the March of Dimes Genetics & Your Practice educational curriculum for use in South Africa.
2003 - 2002. March of Dimes – American International Health Alliance (AIHA) Program to Improve Perinatal Health in Russia and Ukraine
Global Programs established a partnership with AIHA to decrease the rate of preventable birth defects and improve perinatal health in Central and Eastern Europe. During the two years of the project, March of Dimes perinatal health materials were translated into Russian and Ukrainian and disseminated to health professionals throughout AIHA's extensive network of partner clinics in Russia, Ukraine, Moldova and Belarus. Additionally, in November 2003, March of Dimes and AIHA co-sponsored a perinatal health conference in Kiev, Ukraine, for health professionals and policymakers in the region.
2003 - 2001. March of Dimes - Estudio Colaborativo Latino Americano de Malformaciones Congénitas (ECLAMC) Partnership to Promote Birth Defects Surveillance and Monitoring in Latin America
ECLAMC is a scientific organization with over 30 years of experience in building capacity in birth defects surveillance in Latin America. ECLAMC is currently working in Brazil, Venezuela, Colombia, Peru, Bolivia, Chile, Argentina, Paraguay and Uruguay in South America, Costa Rica in Central America and the Dominican Republic in the Caribbean Region. Between 2001 and 2003, March of Dimes supported the expansion of ECLAMC in Ecuador from one participating hospital to a total of 10 hospitals located throughout the coastal and Andean regions of the country.
2001-1999. March of Dimes – National Nutrition Institute of Chile, Pan-American Health Organization, Centers for Disease Control and Prevention, Emory University and University of Florida Alliance to Research the Effects of Folic Acid Fortification in Chile
In January 2000, the government began for the first time to fortify its wheat flour with folic acid. Joining with the National Nutrition Institute of Chile, PAHO, CDC, Emory University and the University of Florida, Global Programs, in 1999, seized this unique opportunity to study the effect fortification of wheat with folic acid on blood folate levels and the subsequent neural tube defect (NTD) rates in women of childbearing age in Chile. Fortifying wheat with 2.2 mg/kg of folic acid resulted in most Chileans getting close to the Institute of Medicine recommended daily intake of folic acid — providing an ideal situation for studying the effects of optimal fortification on blood folate levels and NTD rates. Results showed a 43 percent reduction in NTD rates following fortification. The Chilean success accelerated efforts among other Latin American countries to implement fortification where it did not exist and to strengthen existing programs.
RMNCH and Nutrition
2012-2009. The International Awareness Project
The International Awareness Project, which was conducted by the Italian-based International Clearinghouse for Birth Defects Surveillance and Research and funded by CDC, aimed to improve reproductive outcomes through strengthening preconception health care training and delivery of services. Global Programs participated as a senior member of the project leadership team. As a first step, a database was developed on the worldwide prevalence of maternal risk factors that are modifiable during the preconception period. The project developed demonstration projects to evaluate selected preconception health interventions. Planning for these projects was initiated during a workshop in Brazil in 2011. The first activity was the development of a curriculum to train health care providers in preconception care to reduce rates of obesity and diabetes, and to encourage use of folic acid supplements. Other demonstration projects focused on delivery of preconception care. Additional workshops to identify local demonstration projects were held in other world regions in 2012.
2012 - 2008. March of Dimes – Inter-American Development Bank, CDC, PAHO, INCAP, MINSA partnership for Fortification of Foods with Folic Acid and other Micronutrients in Central America
Central American countries are currently fortifying foods with folic acid and other micronutrients at levels which vary without scientific basis and lack adequate quality control. With primary funding from the Inter-American Development Bank, Global Programs and its partners—the U.S. Centers for Disease Control and Prevention (CDC), Pan-American Health Organization (PAHO), Institute of Nutrition of Central America and Panama (INCAP) and MINSA—helped establish uniform norms and standards for food fortification across the Central American countries of Guatemala, El Salvador, Honduras, Nicaragua, Belize and Panama. This regional approach was unique and offered a model for promoting standardized fortification in other regions of the world. Representatives from the partner organizations formed the technical group charged with establishing uniform standards and quality control for wheat and corn flours, sugar, and salt and oversaw implementation of the program. Micronutrients included folic acid, B-complex vitamins, vitamin A, iron, iodine and zinc. A baseline epidemiological surveillance study was conducted and followed by an impact evaluation to measure reduction in the rates of neural tube defects and other indicators of improved health status among women and children in the region.
2011 – 2010. The Bill and Melinda Gates Foundation (BMGF) Preconception Health Project
The goal of the Bill and Melinda Gates Foundation (BMGF) preconception health project was to develop a set of recommendations for research and intervention within the field of preconception health. The project lead was Aga Khan University, in collaboration with the March of Dimes. A thorough literature review was conducted to identify interventions that work or may have had a high likelihood of success and to uncover research gaps. The literature review was followed by a consultative process leading to the development of a set of preconception health implementation research questions. During 2012, the proposed research was reviewed at a stakeholder meeting hosted by WHO-Geneva whose aim was to develop a global consensus on a public health agenda for preconception care to prevent maternal and infant mortality and morbidity in low- and middle-income countries. The conference resulted in the publication of the meeting’s proceedings and conclusions/recommendations in 2013 by WHO in a report entitled, “Preconception care to reduce maternal and childhood mortality and morbidity. Meeting report and packages of interventions: WHO HQ, February 2012.” WHO is now in the process of accelerating regional initiatives to promote preconception care globally.
2011-2004. March of Dimes – Jawaharlal Nehru Medical College Program to Improve Maternal and Infant Health in India
Global Programs partnered with the JN Medical College, Belgaum, and its affiliate, the KLES Hospital, to develop a training program in perinatal health for primary care providers and community health workers in the Belgaum district of South India. The program focused on improving the clinical care provided to pregnant women and neonates in rural clinics and communities within the catchment area of the KLES Hospital. It resulted in an increase in appropriate referrals and in provision of hospital care to women and neonates from rural areas and succeeded in raising awareness about prenatal and newborn health within rural communities in Belgaum District. Global Programs provided perinatal health information, expert review of curricular materials, and some modest funding in support of the partnership. The program was expanded in 2009 to include community and provider education and provision of health interventions in a periurban area of Belgaum. It was subsequently expanded in the rural areas to include health education for adolescent girls. The pro highly successful adolescent health project served as a model for similar projects throughout Karnataka State.
2010 - 2008. Global Burden of Diseases, Risks and Injuries (GBD) Study
As part of the Global Burden of Diseases, Risks and Injuries (GBD) Study, Global Programs directed the Working Group on Congenital Abnormalities which was charged with defining clear case definitions and disease schematics that depicted the connections among birth prevalence, mortality and disability for three conditions: congenital health disease, neural tube defects and Down syndrome. The project was initiated in January 2008. Results were submitted to the Child Health Epidemiology Reference Group (CHERG) at WHO for review in mid-2010.
2008-2006. March of Dimes - Pan American Health Organization Project to Reduce Maternal Infections
In early 2006, March of Dimes initiated a partnership with the Pan American Health Organization (PAHO) and the Latin American Centre for Perinatology, Women, Maternal and Reproductive Health (CLAP/WMR) to reduce throughout Latin America the incidence of infections that are transmitted vertically from a mother to her fetus or neonate. Global Programs contributed to the development and expert review of a curriculum for health promoters and other primary care providers in the region. The curriculum provides training in the diagnosis and treatment of vertically transmitted infections, as well as tools that health practitioners can use to educate their patients about infection prevention. The curriculum was available in Spanish and English on the PAHO website and was disseminated throughout Latin America and the Caribbean.
2006 -2005. Building Capacity in Perinatal Health in Central Asia, a Partnership with the American International Health Alliance
March of Dimes partnered with the Washington-based American International Health Alliance over a two-year period to develop a perinatal health training curriculum for primary care providers in Turkmenistan. The curriculum formed the basis for training at workshops for physicians, nurses and other primary care providers from urban clinics in Ashgabat (the capital of Turkmenistan), and at workshops for primary care providers across Turkmenistan. The goal of the workshops was to improve provider skills in the diagnosis and treatment of high-risk pregnancies and sick newborns. Following the workshops, two clinics in Ashgabat continued the training on an on-going basis. In July 2006, the curriculum was disseminated to other AIHA partner clinics throughout Central Asia.
Birth Defects and Genetic Disorders
2013 – 2001. International Conferences on the Prevention of Birth Defects and Disabilities in the Developing World (ICBD)
• 6th ICBD – Cebu, Philippines, November 2013
• 5th ICBD – Lodz, Poland, September 2011
• 4th ICBD – New Delhi, India, September 2009
• 3rd ICBD – Rio de Janeiro, Brazil, June 2007
• 2nd ICBD – Beijing, China, September 2005
• 1st ICBD – Johannesburg, South Africa, September 2001
Recognizing the growing need to build capacity in lower-resource countries for the prevention of birth defects and preterm birth and care of those affected, the primary goal of these conferences has been to provide specific practical tools and approaches that developing country participants can use to implement and strengthen services when they return to their respective countries. Participants have included health policy makers, donor organizations, health care providers, experts in data collection and monitoring, researchers, parent-patient organizations and other NGOs and youth volunteers from both the developing and industrialized world. The 6th conference in Cebu was attended by approximately 300 participants. March of Dimes has been a major funder and a key organizer of the conference’s scientific agenda.
2010. March of Dimes – 9th Asia-Pacific Society Conference on Human Genetics Symposium on the Progress of Birth Defects Care and Prevention in the Asia-Pacific Region
In January 2006, the March of Dimes issued its Global Report on Birth Defects: The Hidden Toll of Dying and Disabled Children (March of Dimes, 2009). The report provided detailed data on the birth prevalence of serious birth defects of genetic or partly-genetic origin for 193 countries and offered recommendations for strengthening services for the prevention of serious birth defects and care of affected newborns. In December 2010, the March of Dimes sponsored a symposium at the 9th Asia-Pacific Conference on Human Genetics in Hong Kong to hear from representatives of four countries in the Asia-Pacific region—China, Malaysia, Thailand and the Philippines—about their experiences in the five years since publication of the March of Dimes report in strengthening services for care and prevention of birth defects in their countries. The reports showed significant progress in all four countries to date and highlighted challenges that were common across the countries, suggesting that transnational solutions might be more effective than national ones in addressing some of the current barriers that remain in the region. This finding prompted agreement among the participants that the survey should be extended to as many countries in the Asia-Pacific region as possible in order to better evaluate progress in the region since the publication of the March of Dimes report and to identify common high-priority needs for the future.
2008. Joint 7th Human Genome Organization (HUGO)-Pacific Meeting and 8th Asia Pacific Conference on Human Genetics (Cebu, Philippines)
At this April 2008 meeting, the March of Dimes co-sponsored a plenary to review the global toll of birth defects and discuss how the international community of stakeholders—including policy makers, researchers, donor organizations and parent-patient organizations—could best communicate and coordinate global efforts towards reducing birth defects-associated mortality and disability. Specific international, regional and national strategies were contrasted and evaluated and submitted to WHO Geneva for their consideration.
2003. March of Dimes - PAHO Technical Conference on Folic Acid Fortification in the Americas (Washington, DC)
In January 2003, PAHO, in co-sponsorship with the March of Dimes Global Programs and CDC, convened a technical consultation on Recommended Levels of Folic Acid and Vitamin B12 Fortification in the Americas in Washington, DC. The topic of the consultation has been the subject of considerable international debate and disagreement. This meeting was a milestone in that participants, for the first time in any public forum on this issue, achieved consensus on what the recommended fortification levels for folic acid and vitamin B12 should be. The conference proceedings were published in June 2004 in the journal, Nutrition Reviews, in the hopes of influencing fortification policy in other regions.
2003. March of Dimes - PAHO Regional Conference on Folic Acid Fortification (Santiago, Chile)
In October 2003, PAHO, in co-sponsorship with the March of Dimes Global Programs and CDC, cosponsored a regional conference in Santiago, Chile, to promote standards for fortification of flour with folic acid and other micronutrients in the countries of the Americas. The goal of the conference, which was attended by representatives from 20 countries of the region, was to strengthen national fortification programs. The conference highlighted the experience of the successful national folic acid fortification campaign instituted by Chile in January 2000 and drew on recommendations of the January Technical Consultation. Following the conference, a number of countries activated national micronutrient committees to analyze the feasibility of the recommended changes in their populations.
2002. March of Dimes – China Ministry of Health Conference on Maternal and Child Health Genetics in China in the 21st Century (Beijing, China)
In partnership with the China Preventive Medicine Association and Ministry of Health, the CDC, the Health Resources Services Administration (HRSA), Astoria-Pacific International and Golden Bridge, Inc., Global Programs conducted a three-day conference and workshop in Beijing in October 2002. The conference brought together international genetics experts and health officials from three provinces and three major metropolitan areas in China, and the national government. The conference provided an opportunity for participants to develop a framework and associated action steps for implementing genetic services and education programs to prevent and treat genetic diseases in their populations.
RMNCH and Nutrition
2013. SEARO Regional Expert Group Consultation on Preconception Care
March of Dimes collaborated in this meeting, which was held in New Delhi, India, in August 2013 with WHO/SEARO and the Centers for Disease Control and Prevention. Its purpose was to review the evolving global and regional vision for pre-conception care; present available evidence for preconception care interventions and best practices to deliver services; develop consensus on the need and content of services for pre-conception care through a ‘Healthy Transitions for Adolescents’ package and pre-pregnancy care; identify implementation modalities of integrating the interventions in the existing RMNCH and related programs; and outline research priorities in ‘Healthy Transitions for Adolescents’ and ‘Pre-pregnancy‘ care for the region. The conference resulted in a report entitled “Healthy Transitions: Promoting Preconception Care in the South East Asia Region.”
2012. Meeting to Develop a Global Consensus on Preconception Care to Reduce Maternal and Child Mortality and Morbidity
March of Dimes collaborated in hosting this meeting with the WHO Department of Maternal, Newborn, Child and Adolescent Health in Geneva in February 2012. The conference resulted in the publication of the meeting’s proceedings and conclusions/recommendations in 2013 by WHO in a report entitled, “Preconception care to reduce maternal and childhood mortality and morbidity. Meeting report and packages of interventions: WHO HQ, February 2012.”
2011. World Health Summit 2011, “Today's Science – Tomorrow's Agenda” – Preconception Care: An Emerging Agenda
In October 2011 the March of Dimes, in collaboration with the Aga Khan University, the World Health Organization and the Bill & Melinda Gates Foundation, will held a symposium at the Charité - Universitätsmedizin in Berlin exploring the emerging area of preconception care and its links with the adolescent health agenda in developing countries as a template for potential interventions that can be developed further for implementation globally.
2010. The 1st European Congress on Preconception Care and Preconception Health (Brussels, Belgium)
The conference, held October 2010, convened experts in the field of preconception health from Europe and the U.S. to present implementation research findings and policy recommendations from countries across Europe and the U.S. Following the presentations, conference participants worked together to develop a set a preconception care recommendations that were then presented to the European Parliament and EU country ministries of health. Following the conference, a regional network of researchers and practitioners "Procop" was formed. To date, information has been shared among members in a regularly issued newsletter. The 2nd European Congress on Preconception Care and Preconception Health is to be held in the Netherlands in 2012.
2008. 1st Central and Eastern European Summit on Preconception Health and Prevention of Birth Defects (Budapest, Hungary)
The conference, held in August 2008, brought together clinicians and researchers from across Central and Eastern Europe (CEE), as well as participants from Western Europe and the United States. The conference provided a platform for review, analysis and discussion of the promotion of women’s health before, during and beyond pregnancy and of the role of preconception health and health care in the prevention of birth defects in the Central and European region. Participants identified strategies and specific action steps to improve preconception health and strengthen birth defects surveillance, research and prevention in the CEE region. Recommendations were shared with stakeholders, including ministries of health, within the CEE region.
2000. March of Dimes – Roosevelt Warm Springs Institute for Rehabilitation International Conference on Post-Polio Syndrome: Identifying Best Practices in Diagnosis and Care (Warm Springs, Georgia)
The March of Dimes, in collaboration with the Roosevelt Warm Springs Institute for Rehabilitation, sponsored an international symposium on post-polio syndrome (PPS) in Warm Springs, Georgia, in May 2000. The two-day symposium gathered the world’s leading experts on the causes of PPS; diagnostic criteria; features of the disorder, including neurological, musculo-skeletal and respiratory problems; and treatments such as physiotherapy, occupational therapy, coping skills, and nutrition. Participants reviewed current information on the syndrome’s causes and enabled information exchange on best practices regarding diagnosis, treatment, and management of PPS. Priorities for future research were outlined in areas of causation, diagnosis, and clinical management, where there are important gaps in knowledge.
Preterm Birth and Perinatal Events
2013. Preventing preterm births: Analysis of Trends and Potential Reductions with Interventions in 39 Countries with Very High Human Development Index
In November 2012, March of Dimes led efforts to conduct an analyses of interventions to reduce preterm births in high-income countries. This effort, which involved the Eunice Kennedy Shriver National Institute of Child Health and Human Development, Global Alliance to Prevent Prematurity and Stillbirth, World Health Organization, Bill & Melinda Gates Foundationand other international experts from governments and academia, resulted in publication of a lead article in the Lancet (2013. Preventing preterm births: analysis of trends and potential reductions with interventions in 39 countries with very high human development index. Chang HH, Larson J, Blencowe H, Spong CY, Howson CP, Carins-Smith S, Lakritz EM, Lee SK, Mason E, Serazin AC, Walani S, Simpson JL, Lawn JE. Lancet; 381:223-34.). Given the wide inter-country variations reported by the analysis, the report implies that much can be learned by extending the best practices of low-rate high-income countries to high-rate high-income countries and to selected middle- and low-income countries.
2012. Born Too Soon: The Global Action Report on Preterm Birth
March of Dimes, in partnership with WHO-Geneva, the Partnership for Maternal, Newborn and Maternal Health and Save the Children, issued a report in May 2012 presenting the first-ever country-level rates of preterm birth for 193 countries. The report also offered recommendations for prevention and care across the preconception, maternal, newborn and child health continuum in low-, middle- and high-income countries. Report editors were affiliated with the March of Dimes, WHO-Geneva, Save the Children, and the Partnership for Maternal, Newborn and Child Health. Contributions to and review of the report were made by over 100 scientific experts, including several WHO staff members. The report was endorsed by 40 organizations worldwide and its data included in the WHO Bulletin.
2009. March of Dimes White Paper on Preterm Birth: The Global and Regional Toll
March of Dimes and WHO-Geneva issued a report in September 2009 at the Fourth International Conference on the Prevention of Birth Defects and Disabilities in the Developing World in New Delhi, India. The report presented global and regional rates of preterm birth and offered recommendations for next steps. Its publication resulted in world-wide media coverage and increased the attention of policy makers and donor organizations to the need for strengthening services for preterm birth care and prevention.
Birth Defects and Genetic Disorders
2006. March of Dimes Global Report on Birth Defects: The Hidden Toll of Dying and Disabled Children
In January 2006, March of Dimes released its Global Report on Birth Defects, the first ever report to provide estimates of the toll of serious genetic birth defects in 193 countries and offer cost-effective recommendations for care and prevention. The report focused international attention on the neglected problem of birth defects in developing countries and helped pave the way for the May 2010 resolution of the WHO’s World Health Assembly calling on member countries to take steps to strengthen services for care and prevention.
2006. Management of Birth Defects and Hemoglobin Disorders: Report of a Joint WHO-March of Dimes Meeting
This joint report of the March of Dimes and WHO-Geneva endorsed the findings and recommendations of the March of Dimes Global Report on Birth Defects and urged international action to reduce avoidable death and disability from birth defects.
RMNCH and Nutrition
2002. Nutrition Today Matters Tomorrow - International Nutrition Guidelines for Women of Childbearing Age, Pregnant and Lactating Women, and Children from Birth to Age Two Years
In partnership with the March of Dimes Office of Education and Health Promotion, Global Programs helped prepare this report which reviewed the basic underlying scientific issues in developing nutrition guidelines to promote optimal maternal and infant outcomes during pregnancy and early childhood and offered recommendations for women of childbearing age, pregnant and lactating women, and children from birth to age two years. The report, aimed at health care providers and policy makers, did not present new Recommended Dietary Allowances or other guidelines, but intended to put the recommended nutrient intakes established by other organizations into food-based implementation approaches appropriate to each of the groups identified above.
2001. Post-Polio Syndrome: and Identifying Best Practices in Diagnosis and Care
The March of Dimes published this report to help health care professionals better identify and diagnose post-polio syndrome and advise their patients on the best treatment, and to spur the development of networks and partnerships among relevant practitioners and organizations. The report was actively disseminated in both hardcopy and electronic format to a broad audience, including medical care practitioners; professional organizations; and schools of medicine, nursing, and allied health professions within the United States and abroad.
2001. Guidelines for People Who Have Had Polio
This companion report was directed to polio survivors with PPS, family caregivers and other consumers, providing a condensed discussion of the previous report in understandable lay language. The goal of both reports was to inform and empower both providers and patients so that they can work together as a team to develop informed individualized treatment plans.
2014. Preconception health assessment in China, Lebanon and the Philippines: Applicability to other countries. Reeve ME, Charafeddine L, Zhong N, Padilla CD, Yunis K, El Rafei R, Alamiddine K, Zhao X, Jiang X, Howson CP. Maternal and Child Health Journal, 18(5):1066-74.
2013. Born too soon: preterm birth matters. Howson CP, Kinney MV, McDougall L, Lawn JE. Reproductive Health, 10 (Suppl 1):S1.
2013. Born too soon: care before and between pregnancy to prevent preterm births: from evidence to action. Dean SV, Mason EM, Howson CP, Lassi ZS, Imam AM, Bhutta ZA. Reproductive Health, 10 (Suppl 1):S3.
2013. Born too soon: accelerating actions for prevention and care of 15 million newborns born too soon. Lawn JE, Kinney MV, Belizan JM, Mason EM, McDougall L, Larson J, Lackritz E, Friberg IK, Howson CP. Reproductive Health, 10 (Suppl 1):S6.
2013. Born Too Soon preterm prevention analysis group. Preventing preterm births: analysis of trends and potential reductions with interventions in 39 countries with very high human development index. Chang HH, Larson J, Blencowe H, Spong CY, Howson CP, Cairns-Smith S, Lackritz EM, Lee SK, Mason E, Serazin AC, Walani S, Simpson JL, Lawn JE. The Lancet, 381(9862):223-34.
2013. A solution pathway for preterm birth: accelerating a priority research agenda. Lackritz EM, Wilson CB, Guttmacher AE, Howse JL, Engmann CM, Rubens CE, Mason EM, Muglia LJ, Gravett MG, Goldenberg RL, Murray JC, Spong CY, Simpson JL, and the Preterm Birth Research Priority Setting Group (includes Howson, CP). The Lancet Global Health, 1(6): e328-e30.
2013. Setting research priorities for preconception care in low- and middle-income countries: aiming to reduce maternal and child mortality and morbidity. Dean S, Rudan I, Althabe F, Webb Girard A, Howson C, Langer A, Lawn J, Reeve ME, Teela KC, Toledano M, Venkatraman CM, Belizan J, Car J, Chan KY, Chatterjee S, Chitekwe S, Doherty T, Donnay F, Ezzati M, Humayun K, Jack B, Lassi ZS, Martorell R, Poortman Y, Bhutta Z. PLoS Medicine 10(9): e1001508. Published online September 3, 2013; doi: 10.1371/journal.pmed.1001508.
2012. 15 million preterm births annually: What has changed this year? Kinney MV, Lawn JE, Howson CP, Belizan. J. Reproductive Health. Published online November 13, 2012; 9:28. doi: 10.1186/1742-4755-9-28.
2012. A Mother's Day Plan to Reduce Preterm Birth. Howson CP, Kinney MV, Lawn JE and McDougall, LL. The InterDependent.
2009. The March of Dimes Global Network for Maternal and Infant Health: harnessing the power of experts in lower-income countries to improve the health of women, mothers, newborns and babies. Howson CP, Zhong N, Padilla C, Yunis K, Giugliani R. Journal of Peking University Health Sciences 41: 328-332.
2008. Controlling birth defects: Reducing the hidden toll of dying and disabled children in lower-income countries. Howson CP, Christianson AC, Modell B. Disease Control Priorities Project (DCPP), Washington, DC. Published online December 2008; http://www.dcp2.org/file/230/dcpp-twpcongenitaldefects_web.pdf.
2005. Reducing the global toll of birth defects (correspondence). Howse JL, Howson CP, Katz M. The Lancet 365:1846-1847.
2003. Consumption of folic acid-fortified bread improves folate status in women of reproductive age in Chile. Hertrampf E, Cortes F, Erickson JD, Cayazzo M, Freire W, Bailey LB, Howson CP, Kauwell GP, Pfeiffer C. Journal of Nutrition 133:3166-3169.
2000. The Promise of Science. Investment in Genetics. Fighting to Breathe. Global Programs. Howson CP, Green NS, Leavitt RP, Fiore E, eds. The March of Dimes Research Annual Report. White Plains, NY: March of Dimes Birth Defects Foundation, Pub. No. 31-1450-00.
1999. The Promise of Science. Pursuing the Mysteries of Folic Acid. Showing Promise: Gene Therapy Moves Ahead. Howson CP, Leavitt RP, Fiore E, eds. The March of Dimes Research Annual Report. White Plains, NY: March of Dimes Birth Defects Foundation, Pub. No. 31-1342-99.
1998. The Promise of Science. Gene Therapy: What and Why. Prematurity: Born too soon, too small. Howson CP, Leavitt RP, Fiore E, eds. The March of Dimes Research Annual Report. White Plains, NY: March of Dimes Birth Defects Foundation, Pub. No. 31-1160-98.