Using Secondary Datasets to Understand Persons with Developmental Disabilities and their Families

Series Page

Series Preface

Preface for Volume 45

Contributors

Chapter One. Using Secondary Datasets in Disability Research: Special Issues, Special Promise

Abstract

1 Defining Secondary Datasets and Secondary Data Analyses

2 Large-Scale Studies in the Field of Intellectual and Developmental Disabilities

3 Approaching the Future: Recent Large-Scale Data Initiatives in Intellectual Disabilities

4 Concluding Thoughts

References

Chapter Two. Linking Datasets: A Practical Guide to Research Using Secondary Analysis

Abstract

1 Introduction

2 Record Linkage Literature Review

3 Computer Software for Linkage

4 Record Linkage Tutorial

5 Deterministic Linkage Tutorial

6 Probabilistic Record Matching Using RecordLinkage

7 Results

8 Conclusion

Acknowledgments

References

Chapter Three. NDAR: A Model Federal System for Secondary Analysis in Developmental Disabilities Research

Abstract

1 Introduction

2 A Comparison of NDAR with Other Data Repositories

3 Using NDAR for Secondary Analysis

4 NDAR Model and Lessons Learned for Other Research Communities

5 Maintain Data Professionally

6 Secondary Analysis Results

7 Conclusion

References

Chapter Four. Large-Scale Datasets in Special Education Research

Abstract

1 Large-Scale Datasets in Special Education Research

2 Overview of Large-Scale Datasets

3 Benefits, Challenges, and Considerations

4 An Example of Preliminary Steps in Analyzing Large-Scale Data

5 Concluding Thoughts

References

Chapter Five. Studying Racial and Ethnic Health Care Disparities Among Children with Intellectual and Developmental Disabilities Using the National Survey of Children with Special Health Care Needs

Abstract

1 Introduction

2 Background

3 Method

4 Results

5 Discussion

6 Conclusion

Acknowledgments

References

Chapter Six. Understanding the Similarities and Differences in Aging with an Intellectual Disability: Linking Irish General Population and Intellectual Disability Datasets

Abstract

1 Aging in Ireland

2 Aging Demographics of Persons with an ID in Ireland

3 Aging Experiences of People with ID

4 Methods

5 Results

6 Discussion

7 Conclusion

Acknowledgments

References

Chapter Seven. Using the Survey of Income and Program Participation to Compare the Physical Health of Non-Caregivers to Caregivers of Individuals with Intellectual and Developmental Disabilities

Abstract

1 Current Literature about Caregiver Physical Health

2 Approach

3 Results

4 Discussion

Acknowledgments

References

Chapter Eight. Application of Population-Based Linked Data to the Study of Intellectual Disability and Autism

Abstract

1 Introduction

2 Making a Distinction Between Different Disabling Conditions

3 Data Linkage in WA

4 Disability Registers

5 Further Broadening of Linkage Infrastructure

6 Examples of Studies Using Linked Data

7 Planned Studies Using Linked Data

8 Data Management and Statistical Analysis

9 Translational Opportunities for Linked Data in “The Real World”

10 Conclusion

Acknowledgments

References

Chapter Nine. Large-Scale Datasets Referenced in Volume 45 of the International Review of Research in Developmental Disabilities

Abstract

1 Themes

2 Datasets

References

Index

Contents of Previous Volumes