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Birth Defects Surveillance Toolkit
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    Manual

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    Explore the manual by reading it from the beginning or selecting any chapter. You can download a copy from the Resource Library to search, save, or print.

    Chapter 1: Surveillance of Congenital Anomalies
    Chapter 1: Surveillance of Congenital Anomalies
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    Chapter 2: Planning Activities and Tools
    Chapter 2: Planning Activities and Tools
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    Chapter 3: Approaches to Surveillance
    Chapter 3: Approaches to Surveillance
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    Chapter 4: Diagnosing and Coding Congenital Anomalies
    Chapter 4: Diagnosing and Coding Congenital Anomalies
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    Chapter 5: Congenital Infectious Syndromes
    Chapter 5: Congenital Infectious Syndromes
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    Chapter 6: Coding and Diagnosis
    Chapter 6: Coding and Diagnosis
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    Chapter 7: Primer on Data Quality in Birth Defects Surveillance
    Chapter 7: Primer on Data Quality in Birth Defects Surveillance
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    Appendices
    Appendices
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    Page last reviewed: November 30, 2020
    Content source: Division of Birth Defects and Developmental Disabilities, NCBDDD, Centers for Disease Control and Prevention
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    • Manualplus icon
      • Objectives
      • 1. Surveillance of Congenital Anomaliesplus icon
        • 1.1 Introduction
        • 1.2 Purpose of congenital anomalies surveillance
        • 1.3 Types of surveillance programmes
        • 1.4 Congenital anomalies – definitions
      • 2. Planning Activities and Toolsplus icon
        • 2.1 Logic models
        • 2.2 Partners and funding
        • 2.3 Legislation
        • 2.4 Privacy and confidentiality issues
        • 2.5 Data dissemination
        • 2.6 Communicating with parents
      • 3. Approaches to Surveillanceplus icon
        • 3.1 Population coverage
        • 3.2 Case ascertainment
        • 3.3 Case finding
        • 3.4 Case inclusion
        • 3.5 Description formats for congenital anomalies
        • 3.6 Age of inclusion
        • 3.7 Inclusion of pregnancy outcomes
        • 3.8 Coding system
        • 3.9 Potential inclusion/exclusion criteria
        • 3.10 Core ascertainment variables
        • 3.11 Data-collection methods and tools
        • 3.12 Data management and protocols
        • 3.13 Data collection and management
      • 4. Diagnosing and Coding Congenital Anomaliesplus icon
        • 4.1 Lists of selected external and internal congenital anomalies to consider for monitoring
        • 4.2 Congenital Malformations of the Nervous System: Neural tube defects
        • 4.2a Anencephaly
        • 4.2b Craniorachischisis
        • 4.2c Iniencephaly
        • 4.2d Encephalocele
        • 4.2e Spina Bifida
        • 4.3 Congenital anomalies of the nervous system: Microcephaly
        • 4.4 Congenital Malformations of the Ear
        • 4.5a Overview Congenital heart defects: Prenatal diagnosis and postnatal confirmation
        • 4.5b Common Truncus
        • 4.5c Transposition of Great Arteries
        • 4.5d Tetralogy of Fallot
        • 4.5e Pulmonary Valve Atresia
        • 4.5f Tricuspid Valve Atresia
        • 4.5g Hypoplastic Left Heart Syndrome
        • 4.5h Interrupted Aortic Arch
        • 4.6 Orofacial Clefts
        • 4.7 Congenital malformations of the digestive system
        • 4.8 Congenital Malformations of Genital Organs
        • 4.9a Congenital malformations and deformations of the musculoskeletal system: Talipes Equinovarus
        • 4.9b Congenital malformations and deformations of the musculoskeletal system: Limb reduction defects/limb deficiencies
        • 4.9c Limb Deficiency Amelia
        • 4.9d Limb Deficiency: Transverse Intercalary
        • 4.9e Limb Deficiency: Longitudinal Preaxial (Tibia, Radius, First Ray)
        • 4.9f Limb Deficiency): Longitudinal Postaxial (Fibula, Ulna, Fifth Ray)
        • 4.9g Limb Deficiency: Longitudinal Postaxial
        • 4.9h Limb Deficiency: Longitudinal Axial Limb Deficiency – Split Hand and Foot
        • 4.10 Abdominal Wall Defects
        • 4.11 Chromosomal Abnormalities
      • 5. Congenital Infectious Syndromesplus icon
        • 5.1 Congenital Rubella Syndrome (CRS)
        • 5.2 Congenital Syphilis
        • 5.3 Congenital Cytomegalovirus (cCMV)
        • 5.4 Congenital Zika Syndrome (CZS)
      • 6. Coding and Diagnosisplus icon
        • 6.1 Coding of Congenital Anomalies
        • 6.2 International Classification of Diseases
        • 6.3 Personnel Responsible for Diagnosing and Coding
        • 6.4 Effect of the Certainty of Diagnosis on Coding
        • 6.5 Coding Multiple Congenital Anomalies
        • 6.6 Use of Codes for Surveillance, Data Analysis and Presentation
      • 7. Primer on Data Quality in Birth Defects Surveillanceplus icon
        • 7.1 Why data quality matters; A surveillance scenario
        • 7.2 Data that are “fit for use”
        • 7.3 SMART and SMARTER goals
        • 7.4 General good data strategies and practices
        • 7.5 Key Characteristics of Data Quality in Public Health Surveillance
        • 7.6 Quality Data come from Quality Processes
        • 7.7 Processes Must be Made Visible
        • 7.8 Quality and “waste” in surveillance
        • 7.9 Simple tools to improve data quality
        • Chapter 7 Concluding remark
      • Appendicesplus icon
        • Appendix A
        • Appendix B
        • Appendix C
        • Appendix D
        • Appendix E
        • Appendix F
        • Appendix G
        • Appendix H
        • Appendix I
        • Appendix J
        • Appendix K
    • Quick Reference Handbookplus icon
      • Congenital Anomalies of the Nervous Systemplus icon
        • Neural Tube Defects
        • Anencephaly
        • Craniorachischisis
        • Iniencephaly
        • Encephalocele
        • Spina Bifida
      • Congenital Anomalies of the Nervous System: Microcephaly
      • Congenital Anomalies of the Ear: Microtia/Anotia
      • Congenital Heart Defectsplus icon
        • Common Truncus
        • Transposition of Great Arteries
        • Tetralogy of Fallot
        • Pulmonary Valve Atresia
        • Tricuspid Valve Atresia
        • Hypoplastic Left Heart Syndrome
        • Interrupted Aortic Arch
      • Orofacial Cleftsplus icon
        • Cleft Palate
        • Cleft Lip Only
        • Cleft Palate with Cleft Lip
      • Congenital Anomalies of the Digestive Systemplus icon
        • Oesophageal Atresia/Tracheo-Oesophageal Fistula
        • Large Intestinal Atresia/Stenosis
        • Anorectal Atresia/Stenosis
      • Congenital Anomalies of Genital and Urinary Organsplus icon
        • Hypospadias
        • Renal Agenesis/Hypoplasia
      • Congenital Anomalies and Deformations of the Musculoskeletal System: Talipes Equinovarus
      • Limb Reduction Defects/Limb Deficienciesplus icon
        • Amelia
        • Transverse Terminal
        • Transverse Intercalary
        • Longitudinal Preaxial (Tibia, Radius, First Ray)
        • Longitudinal Axial Defects – Split Hand and Foot
        • Longitudinal Postaxial (Fibula, Ulna, Fifth Ray)
      • Abdominal Wall Defectsplus icon
        • Omphalocele
        • Gastroschisis
      • Chromosomal Abnormalities: Trisomy 21 (Down Syndrome)
      • Congenital Infectious Syndromesplus icon
        • Congenital Rubella Syndrome
        • Congenital Syphilis
        • Congenital Cytomegalovirus
        • Congenital Zika Syndrome
    • Image Galleryplus icon
      • Congenital anomalies of the nervous system
      • Congenital anomalies of the ear
      • Congenital heart defects
      • Orofacial clefts
      • Congenital anomalies of the digestive system
      • Congenital anomalies of the genital and urinary organs
      • Congenital anomalies and deformations of the musculoskeletal system
      • Abdominal wall defects
      • Chromosomal abnormalities
      • Congenital infectious syndromes
    • Facilitator’s Guideplus icon
      • Birth Defects Surveillance Course Overview
      • Module 1: Introduction to Congenital Anomalies Surveillanceplus icon
        • 1.1 Public Health and Surveillance of Congenital Anomalies
        • 1.2 Congenital Anomalies
        • 1.3 Surveillance
        • 1.4 Evaluation Questions 1
      • Module 2: Introduction to Planning Activities and Toolsplus icon
        • 2.1 Logic Models
        • 2.2 Legislation
        • 2.3 Privacy and Confidentiality Issues
        • 2.4 Partnerships and Funding
        • 2.5 Communicating with Parents
        • 2.6 Evaluation Questions 2
      • Module 3: Introduction to Surveillance Approachesplus icon
        • 3.1 Epidemiology
        • 3.2 Population Coverage
        • 3.3 Case Ascertainment
        • 3.4 Case-Finding
        • 3.5 Case Inclusion
        • 3.6 Inclusion Criteria
        • 3.7 Inclusion of Pregnancy Outcomes
        • 3.8 Description Formats for Congenital Anomalies
        • 3.9 Core Ascertainment Variables
        • 3.10 Data-Collection Methods and Tools
        • 3.11 Data Collection/Management
        • 3.12 Data-Management Protocol
        • 3.13 Data Analysis
        • 3.14 Data Dissemination
        • 3.15 Evaluation Questions 3
      • Module 4: Introduction to Diagnosis of Selected Congenital Anomaliesplus icon
        • 4.1 External Major Congenital Anomalies for Monitoring
        • 4.2 Evaluation Questions 4
      • Module 5: Introduction to Codingplus icon
        • 5.1 International Classification of Diseases
        • 5.2 Certainty of Diagnosis
        • 5.3 Personnel Responsible for Diagnosis and Coding
        • 5.4 Coding Multiple Congenital Anomalies
        • 5.5 Coding of Congenital Anomalies
        • 5.6 Evaluation Questions 5
    • Resource Libraryplus icon
      • Manual (PDF)
      • Facilitator’s Guide (PDF)
      • Quick Reference Handbook (PDF)
      • Downloads
      • References
      • Glossary
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