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Strengthening integrated surveillance and prevention of birth defects, stillbirths and congenital Zika virus infection to accelerate reduction in newborn mortality

SEA-CAH-37

© World Health Organization 2020

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SEA-CAH-37

Strengthening integrated surveillance and prevention of birth defects, stillbirths and

congenital Zika virus infection to

accelerate reduction in newborn mortality

Meeting Report Regional meeting

Kathmandu, Nepal: 9-11 July 2019

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Contents

Background ... 1 

Objectives ... 2 

Inauguration ... 2 

Technical Sessions ... 3 

Session 1: Progress in Birth Defect Surveillance in the Region ... 3 

Session 2: Progress in Birth Defect Surveillance in the Region ... 4 

Session 3: Stillbirth Surveillance ... 11 

Session 4: Congenital Infections & Birth Defects ... 12 

Session 5: Birth Defects Surveillance Manual: Global Updates ... 19 

Session 6: Country Plan of Action for Birth Defects Surveillance ... 21 

Session 7: Neural Tube Defects: Overview ... 21 

Session 8: Food Fortification Strategy ... 22 

Session 9: Panel Discussion with Experts ... 25 

Conclusions ... 27 

Recommendations ... 28 

Recommendations for Member Countries ... 28 

Recommendations for WHO and Partners ... 29 

Annexures ... 30 

Annex‐1: Message by Dr Poonam Khetrapal Singh, WHO Regional Director for the South‐East Asia  Region ... 31 

Annex‐2: Summary of Country progress ... 33 

Annex‐3: Fortification Dashboard for countries ... 36 

Annex‐4: Country Action Plans ... 48 

Annex‐5: Programme ... 49 

Annex‐6: List of participants ... 50   

   

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Background

In view of the burden of birth defects and their contribution to child mortality and long-term disabilities SEARO in collaboration with CDC Atlanta has developed Regional Strategic Framework for prevention and control of birth defects. Nine Member States in the Region have developed national plans for prevention and control of birth defects.

Under the regional and national plans birth defects surveillance is a key activity. For supporting hospital-based birth defects surveillance an integrated online database, called South-East Asia Region Newborn-Birth Defects (SEAR-NBBD) database has been developed. Regional and National workshops to build capacity in hospital-based birth defect surveillance have been conducted. A network of hospitals across the SEAR countries has been collecting and reporting prospective data on birth defects at birth, stillbirths and newborns to define the burden of birth defects and other perinatal conditions. More than 2.6 million births have been reported over last five years by about 200 hospitals across the SEAR countries selected in consultation with ministries of health. Ongoing support for building capacity in surveillance is being provided to the network hospitals. In addition, we need to strengthen the capacity for improving the quality of data, data analysis and dissemination of analysis for public health action. In the long term, it is planned to integrate the surveillance into the existing national health information system.

For prevention of neural tube defects fortification of staple food with folic acid is an effective public health strategy. WHO-SEARO has been advocating for large scale food fortification with folic acid and B-12 as a one of preventive strategies for neural tube defects. Additional micronutrient iron will address anemia as well. Countries in the region have tried this at small scale and have expressed interest in learning about large scale fortification. WHO and CDC are presently supporting a demonstration project of wheat flour fortification in India to understand its feasibility and effectiveness.

A pilot of stillbirth surveillance was undertaken in selected hospitals. Based on the experience and expert group consultation the form has been simplified and aligned with ICD-PM classification. Most countries have expressed interest to integrate still births surveillance within existing birth defects surveillance in hospitals.

Regional meeting was organized to review the progress of the surveillance and prevention of birth defects activities in the Region It is also proposed to share scientific information and evidence on staple food fortification as well as experience of large scale programmes from other countries in this meeting.

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like zika virus related birth defects will be shared in the meeting and its implications for inclusion in the SEAR-NBBD system.

Objectives

General objective:

To strengthen integrated birth defects-stillbirth surveillance and prevention for reducing perinatal and newborn mortality.

Specific objectives:

1. To review the performance of national surveillance networks and build capacity for improving data quality, data analysis and dissemination.

2. To strengthen capacity in stillbirth surveillance and discuss preventive strategies.

3. To discuss strategies of staple food fortification for prevention of neural tube defects and monitoring of fortification programmes.

4. To consider integration of surveillance of congenital Zika virus infection in the existing NBBD database.

Inauguration

The inauguration was attended by WHO Representative Dr Jos Vandelaer, Director Family Health Gender and Life course, WHO-SEARO Dr Neena Raina, Director of NCBDD, CDC Dr Coleen Boyle, Secretary from Ministry of Health and Population Nepal Mr Ram Prasad Thapalia and His Excellency the Deputy Prime Minister and Minister of Health Mr Upendra Yadav.

After the welcome by Dr Neena Raina, Dr Jos Vandelaer read out the message of WHO-SEARO Regional Director Dr Poonam Khetrapal Singh.

Secretary Mr Thapalia expressed his thanks to the Deputy Prime Minister for providing his valuable time. He emphasized the need for surveillance of birth defects which are not only a major contributor for child mortality but also for lifelong morbidity. Nepal Government is committed for prevention of birth defects and programmes like antenatal folic acid distribution, food fortification and disability programmes.

H. E. Mr Upender Yadav, Government of Nepal emphasized the need for birth defect surveillance and assured to support ongoing integrated system at Nepal. He recalled the achievements of Nepal in MDG 4 and 5, that he attributes to dedication and accessibility of healthcare services, competency of health care providers, and economic development of the country. Nepal is in transition phase and Health is one of the development agenda and has increased the annual budged especially for maternal and child health. Nepal government is committed to health of child and neonates and now need to focus on birth defects which would help in achieving the SDG. Resolution made after WHA 2010 as mentioned by in message of RD WHO. He expressed

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that this regional meeting will provide an essential insight to improving Birth defect and stillbirth surveillance in SEAR Region.

Technical Sessions

DAY 1 PROCEEDINGS

Session 1: Progress in Birth Defect Surveillance in the Region

Dr Neena Raina (WHO-SEARO) presented the overview of Birth Defects in the region. She highlighted that there has been a reduction of 60% in neonatal mortality between 1990 and 2017, which is slower than reduction in child mortality rate of 70% reduction during the same period.

Yet, there were nearly 1.3 million neonatal and under 5 deaths in 2017 and many of these were preventable. She highlighted the fact that as the overall child mortality comes down the birth defects assume greater proportion of cause of mortality.

She shared the journey of collaboration between WHO-SEARO & CDC that started in 2011, soon after the World Health Assembly Resolution on birth defects that was passed by the Member States in May 2010. She mentioned that the Regional Strategic Framework for prevention and control of birth defects was prepared which includes the targets to reduce the prevalence of folic acid-preventable neural tube defects by 35%; reduce the number of thalassemia births by 50%;

reduce congenital rubella; and to eliminate congenital syphilis.

Using the Regional Strategic Framework 9 countries have prepared included national plans for birth defects by the Ministries of Health and 10 countries have set up hospital-based surveillance of birth defects. Out of these 6 countries are participating in online surveillance using the regional database, SEAR-NBBD, while 4 countries are using their own systems for undertaking surveillance of birth defects as per the standards of the SEAR-NBBD database. Out of 230 hospitals registered across the six online countries, 114 hospitals are consistently and regularly reporting data online to the regional database.

She informed that from 2014 to 2018, more than 2.3 million births have been reported in SEAR- NBBD database including 22,492 cases of birth defects. The prevalence of birth defects at birth is 95 per 10,000 births. Defects related to nervous system are the most common reported birth defects in SEAR-NBBD. The prevalence of neural tube defects among stillbirth is very high compared to live births. WHO-SEARO has also supported population-based surveillance in a small area in a state in India. The Integrating birth defects prevention interventions in existing RMNCAH programmes and progress by different countries were also presented in detail.

Dr Coleen Boyle, Director, National Center on Birth Defects and Developmental Disabilities

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team for the collaboration for birth defect surveillance initiative in SEA Region for the last 9 years.

She pointed out the vision of NCBDDD is that “Babies are born healthy, Children reach their potential, And everyone thrives” and the mission is to save babies by studying and addressing the causes of birth defects; help children reach their potential by understanding developmental disabilities; reduce complications of blood disorders; and improve the health of people living with disabilities. In the United States, every 4 ½ minutes, a baby is born with a major birth defect.

That’s about 1 in every 33 babies. Annually, about 3-6% of infants across the globe are born with a serious birth defect. This means that every year, millions of babies and families are affected by life-altering conditions, regardless of where they are born, their socioeconomic status, or their race or ethnicity. CDC is committed to saving babies through birth defects prevention and research. Dr Boyle stressed that surveillance is the key to understand the country or community prospective and to plan preventive strategies. She congratulates all the participants for this success CRS reduction and elimination by vaccination.

Dr Salimah R. Walani, Vice President March of Dimes Foundation presented the Strategies for Prevention of Birth Defects. She highlighted the historical achievements of March of Dimes including the direct contribution to the development of Polio Vaccines in 1950, supporting policies to promote improvement in the health care, funding research to find the solutions and empowering families with the knowledge and tools to have healthier pregnancies. She pointed out that the global prevalence of birth defects is 3-6%, leading to 8 million affected babies in a year. Over years the neonatal mortality has declined, but the proportion mortality attributed to birth defects have increased significantly from 7% to 29 % from 2000- 2016. As per recent WHO estimates for causes of child mortality, 2000-2016 (Last updated 9 February 2018), globally 295,000 neonatal death were attributed to birth defects, of which 98,034 were from SEA Region.

She highlighted the known risk factors and preventive strategies, which include: Preconception health education and care integration in primary health care and youth-friendly health services;

Premarital counseling; Food fortification strategies; and education of healthcare workers.

Quoting the Lancet 2018 she emphasized multi-dimensional preconception healthcare strategy - no obesity strategy, no under nutrition strategy, no non-communicable diseases strategy, and no adolescent health strategy without including preconception health. She also mentioned a study from China on Universal preconception care and its benefits.

Session 2: Progress in Birth Defect Surveillance in the Region

Dr Rajesh Mehta, WHO-SEARO presented the progress of hospital-based birth defects surveillance in the six countries (Bangladesh, Bhutan, India, Maldives, Myanmar, Nepal) that are presently reporting data online to the SEAR-NBBD database. Thailand has stopped online reporting in 2017 as they have streamlined the birth defects reporting their national systems.

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He presented the year-wise reporting performance of birth defects reporting from these six countries. A summary is provided in the table below. India had the largest number of hospitals registered in the regional network contributing the largest number of births and birth defects reported in the SEAR-NBBD.

Bangladesh Bhutan India Maldives Myanmar Nepal

Number of Hospitals registered 15 4 70 11 22 15

Total Births reported 246,195 21,983 1,545,258 14,922 147,128 275,272 No. of Live Births reported 234,156 21,690 1,494,980 14,842 144,570 271,217

No. of Still Births reported 8,009 293 50,053 80 2,429 4,055

Babies with Birth Defects 1,710 530 13,252 569 561 1,074

Total No. of Birth Defects 2,528 748 18,006 833 610 1,479

Dr Mehta also presented a summary analysis of the data from each of these six countries. Along with the progress in birth defects reporting he also shared the main achievements from each country:

Bangladesh: There has been a progressive increase in enrollment of hospitals in the national network and reporting of birth defects. Monitoring, follow-up and capacity building support by the national coordinating center BSSMU has been effective in maintaining the performance.

Advocacy and technical support and experience from these hospitals has led to incorporation of birth defects variables in the national HMIS (DHIS-2) in 2018. They need to improve the data verification and analysis at the hospital and country levels. WHO support is required to sustain the national network for another 3-4 years until MoH can effectively incorporate NBBD system in the national health information system.

Bhutan: They started with one hospital in 2015 and now 6 hospitals are submitting data online which covers 75% of the total births in the country. In Bhutan MoH is actively leading the surveillance and from May this year they have appointed one extra staff with Nodal officer in the ministry. They are following-up babies till 2 years of age to detect birth defects. Over the years data quality is progressively improving and they have also disseminated the surveillance data in conferences and as publication.

India: There is high political commitment for birth defects and disabilities in the country. The national child health initiative (RBSK) covers screening for birth defects in the age group of birth to 18 years and at all delivery points. In addition, they have set up network of sentinel BD surveillance for high quality data through SEAR-NBBD system. Out of these hospitals about 20 hospitals are directly supervised by coordinating centers that provide ongoing support and

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microcephaly during Zika public health emergency in 2016. India needs to expand the hospitals to improve geographic representativeness.

Maldives: Most deliveries in Maldives happen in hospitals. Birth defects surveillance is undertaken in two main hospitals in Male with high delivery load and Atoll hospitals that cover about 85% births of the country. They include cardiac defects in birth defects surveillance up to one year of age. Data-quality checks and verification are now done by the coordinating center.

Myanmar: Twenty hospitals have been registered at different times but only 6 hospitals are reporting the data. Urgent action is needed to strengthen surveillance and government leadership should address the inconsistent reporting from hospitals.

Nepal: In Nepal, 15 hospitals are reporting and since 2015 Nepal Government has taken over role of support and coordination. The ministry provides specified budget annually to these hospitals to support surveillance. Nepal has started an integrated model in 4 hospitals that brings NBBD, maternal-perinatal death surveillance and quality improvement together.

Dr Mehta moderated a panel discussion with representatives from the countries to share the common challenges and suggestions to improve the birth defects surveillance.

CHALLENGES:

• High patient load in the hospitals keeps the staff busy in clinical work.

• Lack of coordination between OBG and pediatric departments.

• Hospital staff needs to be trained in birth defects surveillance. There is frequent turnover of staff and training must be arranged repeatedly.

• Reporting remains incomplete or delayed. We need dedicated staff to manage data collection, quality check and analysis.

• Lack of resources like funding, poor internet facilities and non-availability of computers.

• The government needs to give high priority to birth defects surveillance as they progress towards achieving SDG targets.

SUGGESTIONS:

• Advocacy to ensure political will, commitment and policy actions.

• Provide adequate funds, resources including data mangers in hospitals and ongoing capacity building to sustain good quality surveillance.

• Invest in data quality, analysis, dissemination and publication to motivate the hospital teams and advocate for policy actions.

• Increase the number of hospitals undertaking surveillance to improve representativeness and incorporate NBBD surveillance in the national health information system.

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PROGRESS REPORT FROM OFFLINE COUNTRIES THAILAND

In Thailand birth defects surveillance is being done using the national health information system.

In 2018, there are 1 case of birth defects out of 8 births. The neonatal mortality was 7 per 1000 live births and stillbirth rate was 20 per 1000 total births in 2018.

CMU data

Year 2016 2017 2018

Live births 1431 1464 1487

Neonatal deaths / 1000 LB 9.6 6.8 7 Stillbirths / 1000 LB 26.55 14.94 20.42

Anomalies 99 115 108

There many preventive measures and rehabilitation being done at country level which are – Prenatal test, Urine test for Zika, amphetamine, Ultrasound

1. Birth defects prevention message in health promotion campaigns

2. Birth defects prevention messages in ANC package i.e. Blood test for Thalassemia screen 3. Prenatal screening (Quad screen): Coverage 65%

4. Newborn screening for congenital hypothyroidism and phenylketonuria: 95% coverage 5. Screening for congenital heart disease: Pulse oximetry at birth in all babies

6. Programmed for care, surgery and rehabilitation: Universal 7. Iron and folic acid supplementation – weekly intervention SRILANKA

Reporting data of 103 hospitals all over country and National Birth defects surveillance is being done from Day 0 to 2 years of age to capture 96 % of birth defects. They include antenatal ultrasound, autopsy findings or any other available investigations to detect birth defects.

• They are going to launch web-based BD surveillance system in DHIS 2 in August 2019, but paper-based surveillance will be continued along with web-based system.

• Workshop will be conducted to provide hands on training to 35 participants in each workshop and whole country will be covered by 2020.

• They are already conducting perinatal death surveillance and response (PDSR) including stillbirth (SB) surveillance with provision of zero reporting and have adopted ICD PM classification system. PDSR reporting has achieved 95% coverage.

• They have analyzed perinatal deaths for the period of 2014-2017 and now moving to linkage of SB registration in the national CRVS (Vital registration) system, that will include the population-based stillbirth registration.

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Going forward they want to improve the quality of surveillance and sustain it at nationwide scale.

TIMOR LESTE

Timor Leste briefed about the new database that they have created at the National hospital through e-medical records. HNGV database was prepared with support of WHO and includes e- records of all women admitted for delivery and newborns. All admissions, discharges and deaths in Neonatal and Maternity department are recorded in the online system. It has included the key variables from SEAR-NBBD standard data abstraction forms. It has started since 2018 and supported by WHO & MoH. In 2019 they have identified 18 birth defects yet to analyze the data.

INDONESIA

Birth defects surveillance was started in 13 hospitals in 2014 with training supported by WHO. At present, it is being implemented in 35 hospitals. From 2014 to 2019, total 993 cases of birth defects have been reported.

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Challenges:

• Hospital commitment for quality of data and reporting timelines.

• There is no special financing for birth defect care. It is integrating in MCH, nutrition and immunization program

• Prenatal diagnostic Centre established, but we need to build a referral system.

• The sentinel hospital was chosen by group discussion and advocacy process. Since 2016, the expand of birth defect surveillance is focusing in the exposure area of pollution.

• USG examination has not been a standard of ANC in primary health care.

POPULATION BASED SURVEILLANCE IN INDIA

Mr P.N Mohanty (SWACH Foundation) presented the population-based birth defect surveillance, which was conducted in two districts of Haryana, a state of India covering 1.6 million population.

They studied the feasibility of implementing population-based surveillance, and to measure the prevalence of major birth defects in community. It is a unique surveillance in which ASHA- Community health care workers are trained for collection and reporting of the data. The prevalence of neural tube defects (NTD) is very high in the studied population and the prevalence is much higher in stillbirths compared to live births.

Dr Neerja Gupta, WHO Collaborating Center, AIIMS, New Delhi presented the regional overview of data quality and common quality gaps. She explained how quality of data is being maintained since the inception of SEAR-NBBD database. Over the last four years, there has been significant improvement in completeness and accuracy of data across the hospitals in all countries. Because of increasing experience and monitoring by WHOCC there has been progressive improvement.

She highlighted the main quality gaps, including under-reporting, incomplete description and incorrect coding of birth defects. She emphasized the need for constant supervision, hand holding, retraining of staff in participating hospitals. Timeliness in uploading the BD forms needs further improvement.

Going forward verification of data must be strengthened at hospital and country coordinator levels.

Mr Dhiraj Kumar, data manager at WHO-SEARO presented the birth defects surveillance module being prepared for the DHIS2. Countries in the Region have adopted this platform DHIS2 that was prepared by the Health Information Systems Program (HISP) and supported by the University of Oslo's Department of Informatics. It was released in 2006, free and open source health management data platform used by multiple organizations and governments worldwide in more than 60 countries. It is a web-based system of tools to collect, collate and use health data and

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Dashboards, charts, pivot tables and maps. He demonstrated the prototype of the birth defects module online. The SEAR-NBBD data abstraction form has been replicated in the DHIS2 and generate simple standardized reports.

Country level Experience with DHIS2: Bangladesh

Bangladesh shared experience of HMIS involving facility level information on the DIHS2 platform.

Real time Health Information Dashboard was successfully launched in 2016 with the help of UNICEF along with other development partners. presently having data coverage of more than 97 percent was elaborated. Standardized data management has paved the path for integrating Newborn and birth defects data variables in National HMIS in Bangladesh using DHIS2 platform.

Key Challenges are:

• Supervision and monitoring system is not adequate;

• Manual registration of the clients' particularly pregnant mothers, sick newborn and their follow-up is cumbersome and time consuming;

• Inadequate knowledge of the providers on diagnosis;

• Reporting of data in time, data accuracy and validity.

• Inadequate coordination among different sections of health information system across MIS-DGFP, BBS, CRVS and non-participation of the NGOs & private sectors.

The way forward is to build capacity in correct diagnosis and coding of birth defects, introduce GIS mapping for case tracking system, completely align with the SEAR-NBBD format. Photo ID for the registered case will be integrated in new version of DHIS2; and utilization of data by the decision/policy makers for public health actions.

Pooja Pradhan, WHO-Nepal presented the details of an integrated approach of birth defects surveillance, stillbirths surveillance, maternal-perinatal death surveillance and improvement of quality of care. work in four hospitals in Nepal.

Government of Nepal aims “To eliminate preventable maternal and perinatal mortality by obtaining and using information on each maternal and perinatal death to guide public health actions and monitor their impact”. The MPDSR, SEAR-NBBD and quality improvement have been integrated in the hospitals for improving the health outcomes of women and newborns. It would lead to overall quality improvement following the national protocols, WHO intrapartum care, and postpartum care recommendations by following the WHO Regional point of care quality improvement (POCQI) model.

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Session 3: Stillbirth Surveillance

Dr Neena Raina presented the Regional situation of stillbirth surveillance. She highlighted the burden of stillbirths in SEA Region where 2000 stillbirths occur in a day, or 90 per hour. She expressed her concern that with the present annual reduction rate it will be impossible to achieve the single digit stillbirth rate by 2030. The main challenges are lack of dedicated national stillbirth programmes, variation in stillbirth definition used by countries and poor stillbirth data collection.

She shared the stillbirth surveillance which was started as a pilot study with SEAR-NBBD and adopting the ICD PM system of classification for assigning the cause of fetal loss. In SEAR-NBBD stillbirth surveillance, 74000 stillbirths have been counted from 35 hospitals of four countries.

Now stillbirth surveillance will be expanded to all those hospitals where birth defects are being reported to NBBD. The current need of stillbirth surveillance is to have a good quality data and to start quality assurance and 2nd level verification like birth defect surveillance.

Dr Allisyn Moran presented the Global overview of stillbirths, perinatal audit guidelines and ICD- PM classification.

With limited and poor data, reliable and timely trend of stillbirth estimates are critical to inform the evidence-based decision making, planning and programming, and to report on the Global Strategy Monitoring Framework. The first UN IGME Stillbirth estimates will be launched in 2020.

She emphasized on the need for Perinatal and Neonatal Death Audits to assess the burden of stillbirths and neonatal deaths, causes of death and trends in numbers so as to make stillbirths and early neonatal deaths visible to decision-makers. She also presented the purpose and benefit of ICD PM Classification for understanding cause of perinatal deaths.

Dr Neelam Aggarwal, WHO Collaborating Center at PGIMER, India shared her experience of stillbirth surveillance in SEAR-NBBD from India which is a hospital-based sentinel stillbirth surveillance leveraging the SEAR-NBBD network with three main objectives:

• Count all stillbirths

• Determine cause of fetal death

• End preventable deaths

Currently there are 17 hospitals under two nodal centers; PGIMER, Chandigarh (10 hospitals) and VMMC Safdarjung, New Delhi (7 hospitals). The calculated Stillbirth rate is 32.6 per 1000 total births with prevalence of birth defects among still born is consistently higher than those in liveborn babies – nearly 3 times higher. The achievements of SB surveillance are; Counted the numbers of still births, prevalence of birth defects among still births, proportion of still birth occurring after reaching hospital and causes of still births along with risk factors.

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Dr Bharti Sharma & Dhiraj Kumar introduced the Revised form for Stillbirth surveillance with ICDPM classification system along with online demonstration.

DAY 2 PROCEEDINGS Highlights from day 1

Dr Rajesh Mehta recapped the day 1 proceedings and requested Indonesia to share the annual report with WHO SEARO. The discussions on day 1 centered around birth defects and stillbirth surveillance in the countries of the regions. Key aspects highlighted were the fact that birth defects are common, costly (for the family, community & health systems), preventable and required treatment and care services. Progress was shared from each of the 11 countries reporting into the SEAR-NBBD; 6 online and other 4 offline. Quality of data reported by the countries has improved over the years. Yet completeness, accuracy and timeliness must be observed in the hospital as the mechanism to verify data sets is already in place.

The possibility of using HMIS for birth defect surveillance should be explored; DHIS 2 is already in use in 8 countries. Module for birth defect in DHIS 2 is compatible with NBBD database. Initial experience of using DHIS 2 from Bangladesh was shared. Nepal presented the method for bringing different databases together- maternal, perinatal surveillance, birth defect surveillance and data from NBBD, since the teams using the data from these systems are common as are the hospital teams and the beneficiaries. Maternal & Perinatal Death Surveillance and Response (MPDSR) will contribute by bringing in quality improvement and quality of care aspects.

Still births are an unacknowledged human tragedy, so we need to start by counting the numbers and find underlying causes so that they can be prevented. If a still birth is due to delay in treatment, then the next one should not happen from the same reason/s. Correctable causes must be addressed and recurrence prevented. Multiple technical resources, guidelines provided in this meeting and these should further be shared with MOH, MNCH teams and discuss how to take it forward.

Session 4: Congenital Infections & Birth Defects

Zika Updates: Clinical Features and Lessons from Birth Defects Surveillance

Cynthia Moore, Chief medical officer, congenital and developmental disorders NCBDDD, CDC She started her talk with overview of Zika virus, Single-stranded RNA virus, closely related to dengue and other flaviviruses. Primary transmission is by Aedes species mosquitoes. Majority of infections are asymptomatic with long-term immunity post infection. No vaccine or specific antiviral treatment is available till date. Incidence of ZIKV in pregnancy unknown and infection in 3rd trimester is less severe. Pregnant women can be infected through a mosquito bite or having sex without a condom with an infected partner. It can be passed to the fetus and disrupts future

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development of the nervous system and destroys existing tissue. The clinical phenotype resulting from congenital Zika infection occurs because of loss of brain volume and neurologic dysfunction.

The signs and symptoms form a recognizable pattern that has been termed congenital Zika syndrome.

ZIKA SYNDROME

Loss of brain volume Central and Peripheral Nervous System Impairment Fetal Brain Disruption Sequence

Severe microcephaly Misshapen skull with overlapping

suture Redundant scalp

Central and Peripheral Nervous System Impairment Hearing loss, swallowing problems

Limb contractures Diaphragm paralysis Abnormal tone, seizures, extreme irritability, tremors She elaborated the available diagnostic test like molecular method: Nucleic acid amplification test (NAAT, e.g., RT-PCR) for viral RNA in body fluids or tissues and Serologic method: Zika virus immunoglobulin M (IgM) enzyme-linked immunosorbent assay & Plaque reduction neutralization test (PRNT) to detect neutralizing antibodies in serum. Prenatal Zika virus is an global issue and there are inherent challenges in Zika virus surveillance as there are other congenital infection which can mimic like Zika. She shared her experience based on US registry data where about 5- 10% of infants born to women with possible Zika infection have Zika-related birth defects.

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Nepal delegate asked how various challenges could be addressed including detection of Zika virus infection (as it presents with the common symptom of mild fever); cross reactivity with dengue virus during serological tests, Nepal’s geographical location close to India (where Zika alert has been announced), and non-availability of advanced tests, all of which make detection of Zika virus infection difficult. Dr. Moore accepted that zika virus infection results in mild and non-specific symptoms, so detection is a labour intensive endeavor. In Colombia, they look for babies who might have birth defects due to Zika virus infection in order to maintain high level of surveillance.

So, collaboration of clinical service providers with public health professionals is important to decide if zika virus should even be suspected in the given geography/community.

Bangladesh shared that epidemic of dengue and Zika is just like Rubella i.e. mild illness which can be prevented by vaccination. For rubella we did not go for diagnosis but for Zika we do not have vaccination or any diagnostic test.

Cynthia clarified that there is no vaccination and it is a big challenge. We can have primary prevention till we get vaccination for Zika.

Zika Surveillance, Pregnancy Cohort Study in Thailand: Initial experience

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Zika Surveillance, Pregnancy Cohort Study in Thailand was presented by Ms Phiangjai Boonsuk, Programme Officer Health Emergencies, WHO-Thailand (Thailand). She shared the zika national surveillance report and pregnancy outcomes after acute zika virus infection in Northeastern Thailand through a longitudinal prospective pregnancy cohort study.

As of March 31, 2019, 2220 pregnant women were enrolled, of which 1 was found to be PCR positive & 144 IgM positive. No congenital abnormalities (including microcephaly) were detected.

Of the 1022 women who had delivered, live birth preterm babies were 84 (8.2%) and stillbirth 2 (0.2%). On being enquired about the women who were registered, she clarified that ‘all pregnant healthy women’ were enrolled and the dengue database was used for the baseline as ZV registry did not exist.

Thailand has published clinical guidelines and a manual on prevention and control of ZV infection (preventive health perspective), which would soon be made available in English language (with support from USAID, WHO) for adaptation by other SEAR countries. Zika was also added to National Disease Surveillance and all hospitals, private and public, were required to report pregnant women with rash with fever, joint pains, and conjunctivitis and living in endemic areas.

Infant/ babies with microcephaly or CZS were also to be reported. In the period January 2016 - December 2018, 150 pregnant women were reported with ZV infection. Four cases reported microcephly in the newborn (2.6%), while miscarriage was reported in 6 cases (4%). Surveillance for microcephaly resulted in 330 reported cases of which only 3 (0.9%) were found to be associated with ZV. Others had GBS and other infections. In cases that were only PCR positive, no congenital defect was detected in the newborns.

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Guidelines for addressing congenital Zika virus infection (mother & Newborn): Care and support for congenital Zika virus infection - Dr Tarun Dua

Dr Tarun Dua, Programme Manager, WHO-HQ shared guidance on the care and support for congenital zika virus infection. She described that both Asian strain (prevalent in US and Brazil) and old Asian strain (prevalent in SEAR countries: Bangladesh; India; Indonesia; Maldives;

Myanmar; Thailand) cause congenital defects as was shown by the Thailand study. However, limited resources are currently available since there is no ongoing zika virus epidemic anywhere in the world and due to other competing priorities.

She described the Zika Virus associated outcomes, and associated abnormalities in newborns.

She emphasized that integrated vector control, integrated lab control and integrated surveillance strategy are the way forward. WHO guidelines for pregnancy management in context of ZV and screening assessment & management of neonates & infants with ZV exposure was available as also the toolkit for care and support of people affected by ZV. The key strategies remain prevention, integrated surveillance, and management & support for mothers and children.

She summarized the Manual for health care professional for providing care and support for congenital zika virus in detail. She also mentioned the module 3 for mental health and psychological need of a mother and family. She emphasized that prevention is most important and integrate diagnostic and management part along with long term support for affected babies.

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Congenital Rubella Syndrome Surveillance: Michelle Morales, CDC

Dr Michelle Morales, Medical Officer, Global Immunization Division, CDC presented the key features of Congenital Rubella Syndrome Surveillance. Rubella infection early in pregnancy (<12 weeks) is most dangerous with possibility of foetal death and premature delivery. Congenital rubella syndrome (CRS) is a spectrum of birth defects – often cardiac, ophthalmologic and/or auditory. The purpose of CRS surveillance is to document the burden of CRS prior to rubella vaccine introduction, monitor the impact of rubella vaccine, detect and isolate affected infants rapidly, mitigate the consequences of the disease for infants and families through early provision of appropriate medical care and demonstrate the elimination of CRS and rubella. The types of surveillance recommended include sentinel-site surveillance, enhanced surveillance and linkages to other surveillance (e.g. birth defect surveillance, registries, serological surveys of reproductive- age women). Twenty-three countries remained for rubella vaccine introduction, while 80 countries have eliminated rubella.

While there is no current treatment for CRS beyond management of congenital abnormalities, infection control was an important aspect. Contact isolation precautions are required for any hospital admission until one year of age and healthcare workers caring for the infant are immunized.

Different types of surveillance are recommended for CRS; Sentinel-site: case-based CRS surveillance with laboratory confirmation, Enhanced surveillance: nation-wide case-based, surveillance system (passive, active or both) with laboratory confirmation, and Linking CRS to other surveillance like Integration with birth defect surveillance, Rubella in pregnancy registries, retrospective review of medical record or serological surveys of reproductive-age women.

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Integration of CRS surveillance in NBBD -Sudhir Khanal, WHO SEARO

Dr Sudhir Khanal made a presentation through video link on the integration of CRS surveillance in NBBD and proposed ways in which hospitals/networks and nodal officers could coordinate to bring these systems together. The objective is to ensure that CRS, a set of common preventable birth defects are detected early and public health response initiated to prevent future rubella and CRS. Dr Sudhir briefed the key strategies being used to eliminate measles and control rubella and CRS by 2020 as resolved by WHO regional committee for SEAR in2013. These are:

• Immunization coverage with MRCV more than 95% at national and subnational level

• Surveillance

• Laboratory support

• Linkages with other initiatives

He presented the status of CRS surveillance in SEARO region and integration of CRS surveillance to NBBD or existing nation birth defect registry.

This would become possible only when National CRS focal points and NBBD Country Network Coordinator or their equivalents are available in the countries and adequate support (technical and financial) to the focal points as well as the participating hospitals is made available through MOH, WHO, and partners.

Discussion

Bangladesh mentioned the limited facilities for psychological support at their country. Dr Tarun further clarified the need for mental and psychological support and there is enough evidence to

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train primary level health care worker to provide psychological support. There is need for providing capacity building and trainings. Dr Mehta assured that there will be module for psychological support and module will be prepared to train primary level health care provider.

Bangladesh also raised her doubt about the number of women who were enrolled for ZIKA were

all fever or healthy women. Thailand clarified that all healthy women were enrolled in their study.

Dr Colleen Boyle further added that there is overlapping of infection of ZIKA, CMV and other viral infections. Dr Rajesh Mehta requested all the delegates to clarify immunization PPIs with Sudhir Khanal who is working at regional office WHO SEARO in immunization division.

Session 5: Birth Defects Surveillance Manual: Global Updates

Nathalie Roos (WHO Consultant) and Tarun Dua shared the updated birth defect surveillance material /atlas developed by WHO, CDC and ICBDSR. The 2014 WHO Atlas of selected congenital anomalies developed by WHO, CDC and ICBDSR, focused only on external and visible at birth congenital anomalies, easy to detect and code for low resource settings. However, with the unprecedented rise in the number of children born with microcephaly and spread of zika virus in 2015-2016, there is a need to strengthen birth defects surveillance to include microcephaly and congenital zika infection. To meet the new public health needs, prioritization exercise was conducted by CDC and ICBDSR (in Nov 2018 – Jan 2019) to expand the section on external birth defects and include internal birth defects and congenital infectious syndromes added by consensus.

They highlighted the new sections being added like microcephaly, internal birth defects like congenital heart disease, chromosomal abnormalities and congenital infections. These new sections were drafted by experts and reviewed by Technical Advisory Group. She also presented the outline BD surveillance manual under development. The (draft) updated version of the Atlas includes a broader range of the most common external and at birth visible birth defects, the most common non-visible birth defects, infectious congenital syndromes and trisomy 21. For the non- visible, genetic and infectious congenital syndromes, the Atlas also discusses the required diagnostic tools and case definitions for surveillance purposes. The birth defects included in the Atlas have a significant public health impact and for some there is potential for prevention.

The CDC aimed to finalize all materials by end of 2019 with inputs from SEARO and PAHO. For this purpose, group work was organized, with country teams working together to inform the development of the new updated birth defect atlas.

Group work with the delegates in country teams was conducted to get the feedback to improve the updated material further. Each group was assigned a rapporteur and a facilitator and provided feedback on:

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 new added chapters in the updated atlas

 additional content in the materials under development

 original materials? (What has been most useful? What should have been included bot not there?)

Feedback from the group work:

Bangladesh: Updated atlas would be helpful in further strengthening the birth defects surveillance in the region.

Thailand: suggested to add other chromosomal abnormalities with photograph along with trisomy 21.

India: To add externally visible birth defects like various eye defects and more photographs. In updated atlas, description of each birth defect is in detail, which can be drafted into bulleted forms with more photographs (real pictures) to make it better. India team also suggested to add prognosis and to whom to refer the child for better management. Colour coding can be added depending upon the severity of defects. A separate section can be added for congenital infection syndromes and country specific drug related syndromes.

Myanmar & Nepal: How to write the description of multiple defects in a syndrome should be added.

Sri Lanka & Maldives: To add other chromosomal syndromes and include prenatal screening methods. There should artificial intelligence where we could diagnose the defects by adding photographs. Add RMNCH extension to ICD 10 Coding.

Indonesia & Timor Leste: there is some inconsistency in few chapters and suggested to divide cardiac defects into cyanotic or acyanotic and critical and non-critical birth defects.

Risk factors can be added for each birth defect and photo library of different geographical

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area and population can be added. Instructions to be added in the beginning to whom this atlas is meant for.

Session 6: Country Plan of Action for Birth Defects Surveillance

Country teams were assigned to work in groups to prepare their action plan on following 5 key actions.

Key actions

• Improving quality of BD data, analysis and use

• Scaling up of BD surveillance including training needs (updated manual& atlas)

• Stillbirth surveillance

• Integration of BD surveillance and CRS surveillance

• Inclusion of BD surveillance in HIS

After the group work the country teams presented the key activities for strengthening their birth defects plans over the next year.

DAY 3 PROCEEDINGS

Session 7: Neural Tube Defects: Overview

Global overview of NTD and strategies for prevention: Amy Cordero, CDC

NTD is the serious birth defects of the brain and spinal cord which form in the first month of pregnancy. The common NTDs are anencephaly (39%), spina bifida (49%) and encephalocele (13%). The mortality and morbidity associated with NTD varies depending upon the type of defects like for anencephaly, mortality is 100% whereas for spina bifida child would have varying degree of lifelong disability. There is paucity of data but as per March of dimes report (2006), more than 30,000 NTDs occur each year.

The NTDs are multifactorial and found to have multiple modifiable risk factors like folate insufficiency, VitaminB-12deficiency, Environmental factors (Hyperthermia, toxicants), maternal medication use (e.g. valproic acid, anti-folates), maternal conditions (obesity, diabetes) etc.

Amy also highlighted the preventive strategies for NTD like To increase folate/ folic acid intake

• Folic acid supplements before and during early pregnancy

• Food fortification with folic acid

After presentation Bangladesh clarified the dosage of folic acid tablet at country level and

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Regional burden of Neural tube defects: Dr Rajesh Mehta

Dr Mehta briefed the regional burden of NTD, as SEAR region is on 2nd to EMRO. Estimated NTDs prevalence varies country by country, for example in a study from South India the prevalence of NTD was very high but now showing decreasing trend as now more and more cases are being diagnosed in antenatal period and opting for ETOPFA. Based upon the cumulative assessment of NTDs from NBBD, these estimates are lesser (11 per 10000) to the previous estimates (16/10000).

This might be due to missing data as few cases deliver in odd hours and not picked up to report.

On comparing the prevalence of NTD among LB & SB, it is disproportionally higher almost 2.5 to 3 times higher in SB. One in four children dies before the discharge from hospitals. Among pre- viable birth defects, 59% of cases were attributed to NTD. With such a huge burden of NTD, there is need to strengthen the preventive strategies from primary to secondary prevention by early detection & management. In SEAR region four countries have started with food fortification and many countries have planned.

Session 8: Food Fortification Strategy

Global recommendations on food fortification: Lisa Roger

WHO recommends three interventions to improve the micronutrient intake:

1. Dietary approaches

2. Supplementation –Quick, Limited effectiveness in the long term, requires individuals’

commitment for compliance and targeted approach

3. Fortification -Provides steady supply of micronutrients in the diet and potential to reach a large proportion of the population

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Lisa clarified that daily recommended supplementation dose folic acid for prevention of occurrence of neural tube defects is 400 µg, whereas for prevention of recurrence, 5 mg folic acid daily.

She explained the WHO guidelines for food fortification in detail and concluded that Fortification can be one of several interventions to increase intakes. Fortification strategies should be a part of integrated public health actions, requiring evaluation, operational research and adaptation of guidance to specific country context and it should ensure that efforts are not promoting excessive use of salt or refined sugar or flour.

Fortification improves human health: Global evidence: Emily Keats

Dr Emily Keats, Senior Research Associate at the Centre for Global Child Health, Canada briefly described the burden of various health problems of SEAR region attributed to micronutrient deficiency like iron deficient anemia (50% pregnant and non pregnant women and 42% children are anaemic), 44% children are vitamin A deficient and & 70% of NTD could be preventable with folic acid intake. The status of food fortification in SEAR countries is

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Country Mandatory fortification Voluntary fortification

Bangladesh Oil, salt Rice

Bhutan -- --

DPR Korea -- --

India Salt Oil, rice, wheat flour

Indonesia Salt, wheat flour Oil

Maldives -- --

Myanmar Salt --

Nepal Salt, wheat flour --

Sri Lanka Salt --

Thailand Salt --

Timor-Leste -- --

She shared the result of meta-analysis in which 50 studies out of 136 eligible studies were selected. They found that with folic acid fortification there is increase in Serum folate by 12 nmol/L, 80% reduction in risk of folate deficiency and odds of NTD reduced by 41%. In a similar manner fortification with vitamin A & Iron was also found to improve the micronutrient status and health outcomes of mothers and children.

Food fortification with folic acid is safe: Global evidence: Dr Helena Pachon

Dr Helena Pachon from Food Fortification Initiative (FFI) shared the global status of food fortification with folic acid. Currently, 73 countries include folic acid in their fortification standards for up to 3 foods, including wheat flour, rice and maize flour.

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She emphasized that there is no established risk for adverse consequences resulting from existing folic acid fortification and highlighted following four points in detail with supporting evidence:

1. Fortifying food with folic acid does not mask vitamin B12 deficiency

2. Fortifying food with folic acid does not cause cancer or increase deaths from cancer 3. Free folic acid in blood does not increase cancer or adenoma risk

4. Fortifying food with folic acid is safe Session 9: Panel Discussion with Experts

Dr Helena Pachon moderated the Panel discussion with MR Maharajan (Nepal), Hamed Pouraram (Iran), and Shekhar Vidyarthi (India).

Hamed Pouraram, programme experts from Iran shared his experience of wheat flour fortification which was started 20 years ago. The main objective of this study was to study the effect of fortified flour among non anaemic population. There were three phases i.e. initiation phase, development phase and maturity phase and the most important is maturity phase which is mainly responsible for the sustainability of any community programme. There were challenges like superstition of removing extra iron.

Shekhar Vidyarthi, programme in-charge from India shared the experience of food fortification at Haryana, India. With the help of state government, two districts were chosen and HAFED company was assigned to fortify wheat and oil. Initially fortified food was distributed for midday meal programme and ICDS (Anganwadi) and public food distribution system. Now they have covered 2 districts completely with 1.4million beneficiaries, now planning to cover the whole state of Haryana with 21 districts by 2020.

M R Maharajan, salt iodization expert from Nepal shared the experience and learning from salt fortification programme from Nepal. Key challenges in implementing salt fortification were

1. High iodine loss during transportation, storage, and distribution of salt

2. Consumer preference for large crystal salt due to traditional practices, easy storage, and lower price

3. Limited access to adequately iodized packet salt in remote districts along northern mountain and hill zones

4. Infiltration of non-iodized or inadequately iodized salt from porous border

With the help of Strong Government Leadership and Commitment and budget allocation, mandatory salt iodization was implemented in Nepal and it has been sustained by periodic surveillance & systematic monitoring of Salt Trading Corporation and providing continuous financial and technical support.

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India - clarified that wheat flour fortification increases the price from INR 2 to 5 for consumer.

For quality assurance of fortified food, monitoring & testing is being done as FSSAI (national standards agency) accredited lab.

Bangladesh - shared the planning for rice fortification according country / area specific standards.

Maldives – the law was passed for iodized salt, but no salt is imported there so they need support from MoH for implementing food fortification in their country.

Indonesia – in Indonesia they have draft of regulation for food fortification, but existing labs do not have capacity for standardized each micronutrient. There is need of evidence based, country specific guidelines and regulation of ministry of industry for standardization of fortification.

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Conclusions

• Member States have stabilized the NBBD database over the last few years; only a few new hospitals have been enrolled in the last year.

• Performance of network hospitals in birth defects surveillance has progressively improved in terms of reporting and quality of data; error rates have decreased and an effort for improving quality of data over time has increased.

• Monitoring and ongoing support from national coordinator hospital and / or ministry of health has contributed to improvement in performance

• Verification of data in the hospitals (first level by the hospital nodal officers) and at the second level (national coordinator center / MOH) need to be further strengthened to sustain quality of data.

• Capacity in the countries needs to be strengthened for data analysis, interpretation, and dissemination and use of data for action at all levels of the system.

• Countries reported progressive improvement in implementation of interventions for prevention of birth defects through RMNCAH, Immunization, and nutrition programmes (supplementation and food fortification) and are strengthening care and support programmes.

• The SEAR-NBBD platform can be used to contribute to surveillance of congenital infections like Rubella and Zika virus along with the ongoing birth defects surveillance in the hospitals.

• Countries have included stillbirth surveillance with the revised data collection form in the hospitals participating in the birth defects surveillance. Capacity building is required for stillbirth review and response.

• Fortification of staple food with folic acid,B-12 and iron is an effective and safe public health strategy for addressing anemia and preventable neural tube defects – WHO recommendations on fortification were shared, and evidence presented for effectiveness in improving anemia and decreasing risk of neural tube defects, and that fortification with folic does not ‘mask’ B-12 deficiency or increased risk of cancer colon or mortality because

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• Country teams identified key actions for expansion of surveillance, integration of CRS and Zika virus infection, stillbirth surveillance and response, and strategies for prevention and management of birth defects including consideration of staple food fortification for neural tube defects.

Recommendations

Recommendations for Member Countries

• Provide financial, human and other resources to the hospitals and coordinating center to get good quality actionable country data consistently.

• Expand hospital-based surveillance for birth defects stillbirth and response and provide training and monitoring support.

• Improve the analysis of data and use of data for action to strengthen prevention and care programmes.

• Work with immunization programme for convergence of CRS surveillance and birth defects surveillance.

• Work with Zika preparedness and response programme for including congenital Zika infection surveillance with birth defects surveillance in the NBBD system.

• Work for using the existing national health information platforms like DHIS 2for integration of the NBBD database.

• Strengthen life-course approach for prevention and long-term care of birth defects and improving perinatal outcomes, within existing programmes including supplementation and fortification with folic acid and other micronutrients.

• Consider large scale food fortification programmes for prevention of risk of anemia and neural tube defects.

• Address social issues, potential stigma, and access to services by spreading awareness and building capacity among healthcare workers, families, educationists etc.

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Recommendations for WHO and Partners

• Sustain the SEAR-NBBD Database through the participating hospitals while incorporating in the national health information systems, like DHIS2.

• Build further capacity in data analysis, use of data for action at all levels, publication of data, and evaluation of surveillance system.

• Support Member States to implement plans for prevention, care and management of birth defects, including psycho-social support.

• Support programmes for food fortification with folic acid and other micronutrients by providing evidence-based strategies, tools and capacity building for implementation and monitoring

• Create opportunities for Member States for sharing of experience and technical guidelines.

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Annexures

1. Message from the Regional Director, WHO-SEARO 2. Summary of Country progress

3. Fortification Dashboard for countries 4. Country Action Plans

5. Programme 6. List of participants

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Annex-1: Message by Dr Poonam Khetrapal Singh, WHO Regional Director for the South-East Asia Region

Good morning and a very warm welcome to this important meeting.

Although our Regional Director, Dr Poonam Khetrapal Singh, would have very much liked to attend, she is unable to due to a prior commitment. I therefore take great pleasure in delivering this message on her behalf.

The Regional Director is pleased that in recent years Member States have successfully reduced neonatal and child mortality. According to the 2018 Child Mortality Report, under-5 mortality in the Region has declined by 70% from 1990 baseline levels. During the same period neonatal mortality has declined by 60%. Five of the Region’s countries have already reached the SDG global target for under-5 mortality of 25 per 1000 livebirths or less.

Dr Khetrapal Singh says that the decline in child mortality reflects a decline in mortality from infectious diseases and malnutrition – a very positive trend. She notes, however, that mortality rates from birth defects have remained constant, meaning the proportion of child mortality they account for has increased.

At present, for example, birth defects are the fourth most common cause of neonatal mortality in our Region, contributing to around 12% of mortality. Significantly, they contribute to nearly 30% of neonatal mortality in the Region’s countries that have already achieved low levels of child mortality.

In addition to neonatal and child mortality, the Regional Director observes, birth defects also contribute to an indeterminate number of spontaneous and induced abortions, as well as a significant proportion of stillbirths. Birth defects also contribute to long term morbidity and disability, leading to a high economic and social burden on families, health systems and society at large.

It is for this reason that birth defects must be included in national programmes moving forward.

Distinguished participants,

The Regional Director notes that as far back as 2010 the World Health Assembly adopted a resolution on birth defects. That resolution requests WHO to support Member States develop national plans to prevent and manage birth defects within their national maternal, newborn and child health plans. Since 2012, WHO has been working with the Region’s Member States to do precisely that, in collaboration with the Centres of Disease Control and Prevention, Atlanta.

Dr Khetrapal SIngh says that as part of this initiative, WHO developed a Regional Strategic Framework for the prevention and control of birth defects. Member States have prepared corresponding national plans, which they have integrated into existing RMNCAH-related programmes.

To strengthen the collection of data and information on birth defects and other perinatal health conditions, WHO has established a hospital-based integrated surveillance system – the South-East Asia Regional Newborn Birth Defects Database, or the SEAR-NBBD.

As part of that, WHO has helped build surveillance capacity in the enrolled hospitals, in partnership with the WHO Collaborating Centre at the All India Institute of Medical Sciences, New Delhi and key national institutions.

The Regional Director is pleased to observe that the number of hospitals that consistently report

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provided to maintain the quality of data and build capacity to undertake analysis and disseminate reports to multiple stakeholders to facilitate action.

Importantly, Dr Khetrapal Singh notes, stillbirths have not received adequate attention since the MDG phase, although their occurrence is nearly as high in number as neonatal deaths. To understand the burden of this problem, stillbirth surveillance has been introduced in SEAR-NBBD network hospitals.

WHO is also supporting the integration of the surveillance of congenital rubella syndrome with birth defects surveillance. Notably, the SEAR-NBBD network hospitals have provided a readymade platform to include congenital Zika virus infection-associated birth defects in newborns like microcephaly and neurological conditions among others.

The Regional Director is keen to emphasize that country ownership and support from ministries of health is critical to sustaining the surveillance mechanism. Reporting hospitals require continuous support for capacity building, as well as key human resources such as data reporters and managers to sustain good quality data. Dr Khetrapal Singh recommends that Member States pay specific attention to these issues and use the data and analysis for actions to improve prevention and care services.

Distinguished participants,

The Regional Strategic Framework on prevention and control of birth defects recommends evidence- based strategies for pregnant women like supplementation and fortification with folic acid and vitamins to help prevent neural tube defects.

Over the coming days, staple food fortification will be discussed at length, with the aim of sharing evidence of the effectiveness and safety of large scale fortification programmes. As part of this focus, the Member States may like to consider staple food fortification programmes as public health strategy to address anemia and prevent neural tube defects.

In addition, this regional meeting provides an opportunity for Member States to review progress in birth defects surveillance, and to discuss ways to strengthen stillbirth surveillance.

Dr Khetrapal Singh urges you to make the most of the opportunity, and to contribute to the fullest.

She wishes you a productive and engaging meeting and looks forward to being apprised of its outcomes.

I echo that sentiment and wish you a comfortable stay in New Delhi.

Thank you.

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