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Intro -- Preface -- Acknowledgements -- Introduction: Birth Defects and Public Health in Low and Middle-Income Countries -- Contents -- Editor and Contributors -- Abbreviations -- List of Figures -- List of Tables -- List of Boxes -- Part I A Public Health Approach -- 1 Birth Defects: A Public Health Approach -- The Need for Birth Defects Services in LMICs -- Individual, Health and Social Welfare System Impact -- Magnitude of Congenital Anomalies -- Epidemiological Transition -- A Public Health Framework -- Birth Defect Surveillance -- Prevention of Birth Defects -- Integrated medical and rehabilitation services -- Other Public Health Activities -- The World Health Assembly Resolution on Birth Defects -- India as an Example of a LMIC -- Socio-demographic and Health Indicators -- Socio-demographic Index and Epidemiological Transition -- Health System -- Maternal and Child Health Services -- References -- 2 Some Common Birth Defects -- Section I : Common Congenital Anomalies/Malformations -- Congenital Heart Defects -- Orofacial Clefts -- Spina Bifida and Neural Tube Defects -- Hydrocephalus, Macrocephaly, Microcephaly -- Clubfoot (Congenital Talipes Equinovarus) -- Developmental Dysplasia of the Hip -- Congenital Limb Defects -- Polydactyly -- Section II : Developmental (Neuromotor) Disabilities -- Intellectual Disability -- Down Syndrome -- Attention-Deficit/Hyperactivity Disorder -- Autism Spectrum Disorders -- Cerebral Palsy -- Congenital Hearing Impairment -- Vision Impairment/Blindness -- Section III : Common Single Gene Disorders -- Hemoglobinopathies -- Hemophilia -- Muscular Dystrophy -- Achondroplasia -- Conclusion -- References -- 3 Thalidomide: Understanding the Responsibilities of a Birth Defects Service -- Thalidomide -- Thalidomide Distribution Across the World -- Thalidomide Embryopathy/Syndrome.
Health and Social Impact of Thalidomide -- Clinical Needs of Children -- Impact of Disability: Schooling -- Impact on Parents -- Health and Welfare Needs with Ageing -- The Response to the Thalidomide Tragedy -- Health and Social Sector Service Response -- Birth Defects Surveillance -- Drug Regulation -- Abortion Legislation -- Compensation and Economic Support -- Regulated Reintroduction of Thalidomide -- Thalidomide in Developing Countries -- Lessons for a Birth Defects Service -- Zika Virus and the Public Health Response -- Congenital Zika Virus Syndrome -- Public Health Response -- Health System Challenges -- Impact on Families -- References -- Part II Surveillance, Registries and Magnitude -- 4 Birth Defects Surveillance in India -- Background -- Birth Defects Surveillance -- Birth Defects Surveillance: Factors Affecting Reporting of Prevalence Data -- Birth Defects Surveillance in LMICs -- Birth Defects Surveillance in India -- Summary and Conclusion -- References -- 5 Rare Disease Registries: A Case Study of the Haemophilia Registry in India -- Disease Registries -- Rare Diseases -- Rare Disease registries -- RDs and registries in India -- The Haemophilia Registry in India -- Haemophilia -- Evolution of Haemophilia Services in India -- World Federation of Hemophilia : Global mentorship -- Annual Global Surveys and the National Hemophilia Registry of India -- Registry data for mobilizing access to care -- References -- 6 Magnitude of Congenital Anomalies in India -- Child Health in India -- Sources of Data -- Congenital Anomaly Prevalence -- Individual Research Studies -- PUBOs Study Estimates -- Estimates from the Modell Database -- Rashtriya Bal Swasthya Karyakram Data -- Data from Birth Defects Surveillance Systems in India -- Congenital Anomaly Mortality -- Data from the Medical Certification of Cause of Death.
National Child Mortality Estimates -- Cause-Specific Mortality Estimates -- Global Burden of Disease Study -- GBDI Congenital Birth Defect Data -- Mortality Data from MGDb -- Disability -- Summary -- References -- 7 Magnitude of Developmental Disabilities in India -- Childhood Development -- Developmental Delays and Disabilities -- Developmental Disabilities -- Tools for Measuring Developmental Disabilities -- Sources of Data -- Developmental Disability Surveillance -- National Surveys -- Ad Hoc Studies -- Prevalence of Developmental Disabilities in India -- Selected Conditions -- Epilepsy -- Cerebral Palsy -- Intellectual Disabilities -- Autism Spectrum Disorders -- Attention-Deficit/Hyperactive Disorders -- Data from Global Burden of Disease Study -- India -- Conclusion -- References -- 8 Magnitude and Characteristics of Children with Congenital Disabilities in India -- Magnitude of CWD -- Prevalence of Childhood Disability by Type of Disability -- Magnitude of CWCD -- Age-Specific Prevalence Per 10,000 -- Duration of Disability -- Characteristics of CWCD -- Severity of Disability -- Self-care and Utilization of Services -- Conclusions -- References -- Part III Prevention -- 9 Preventing Congenital Anomalies Through Existing Maternal and Child Health Services in India -- Background -- Aetiology of Congenital Anomalies -- Teratogens -- Environmental Risk Factors for Congenital Anomalies -- Shared Risk Factors with Other Adverse Pregnancy Outcomes -- Prevalence of Risk Factors for Congenital Anomalies and APOs in Indian Women -- Prevention -- Effectiveness of Preventive Measures -- Opportunities for Prevention in Public Health Programmes: RMNCHA+ Programme in India -- References -- 10 Neural Tube Defects and Folate Status in India -- Neural Tube Defects -- Magnitude of NTDs in India -- Risk Factors -- Folate -- Assessment of Folate Status.
Cut-Offs for Determining Folate Status -- Prevalence of Folate Deficiency in India -- Determinants of Folate Deficiency -- Maternal Methylenetetrahydrofolate Reductase (MTHFR) 677C > -- T Polymorphism -- Summary and Conclusion -- References -- 11 Haemoglobinopathies: Genetic Services in India -- Haemoglobinopathies -- Epidemiology -- Impact of Thalassemia on Patients and Families in Low-Income Settings -- Quality of Life (QoL) -- Out-of-Pocket Expenditure -- Basic Components of a Genetic Service -- History of Development of Thalassemia Services in India -- Guidelines on Haemoglobinopathies in India -- Prevention Strategies -- Pretest and Post-test Counselling in Community-Based Screening Programmes -- Genetic Counselling Education, Testing Laboratories in India -- Medical Care -- Global Strategies for Prevention of Haemoglobinopathies -- Ethical Considerations for Indian Genetic Screening Services -- Monitoring -- Research -- References -- Part IV Services -- 12 Medical, Rehabilitation and Social Welfare Services for Children with Birth Defects and Developmental Disabilities in India -- Organization of Health, Rehabilitation and Social Welfare Services in India -- Medical Services -- Organization of Government and Private Medical Services in India -- Government General Medical Services in India -- Birth Defects Service Components in the Maternal and Child Health Programme -- Prenatal Detection of Foetal Anomalies -- Care of Small and Sick Newborns -- Medical Care for Selected Birth Defects and Developmental Disabilities: RBSK -- Medical Services for Genetic Disorders -- Haemoglobinopathies -- Haemophilia -- Rehabilitation Services -- Rehabilitation Services Through DEICs -- Rehabilitation Services Through National Institutes and Centres -- Social Welfare Services -- Disability Certification -- Disability Policy and Legislations.
Social Rehabilitation Services -- The National Trust -- Education, Skills, Sports, Employment -- Medical Insurance -- Assistive Devices -- Certification of Rehabilitation Professionals -- Legal Services -- Conclusion -- References -- 13 Early Childhood Intervention Services in India -- Early Child Growth and Development -- Milestones of Development -- Factors Affecting Growth and Development of a Child -- Early Childhood Intervention -- Early Intervention Strategies -- Early Intervention Services in India -- District-Based Model for Early Intervention for Children with disabilities -- Conclusion -- References -- Part V Quality of Life -- 14 Birth Defects Stigma -- Stigma -- Birth Defects Stigma -- Birth Defects and the Dimensions of Stigma -- Public Health Activities and Birth Defects Stigma -- Genetic Testing, Genetic Screening and Stigma -- Prenatal Testing and Abortion Stigma -- Disability -- Parents and Caregivers -- Stigma Prevention in a Birth Defects Service -- References -- 15 Parenting a Child with a Disability: A Review of Caregivers' Needs in India and Service Implications -- Introduction -- Evolution of Family Centred Care (FCC) -- Medical and Rehabilitation Needs of Caregivers of Children with Disability in Industrialized Countries -- Needs During Diagnosis -- Need for Information on Disability Services -- Needs of Information on Schooling, Recreation, Assistive Devices -- Needs During Transition Beyond Schooling -- Financial Support -- Parent and Family-Centred Needs -- Needs Related to Respite Care -- Medical and Rehabilitation Needs of Caregivers of Children with Disability in LMICs -- Developing a Model to Address Caregivers Needs in India -- Discussion -- References -- 16 Quality of Life and Psychosocial Needs of Caregivers of Children with Birth Defects: A Case Study of Haemophilia.
Psychosocial Stressors of Haemophilia: A Case Study.
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Birth defects in India : epidemiology and public health implications / / Anita Kar, editor
