| Description |
1 online resource (463 pages) |
| Contents |
Cover; Copyright; Contents; Executive Summary; Section I. Creating Registries; Chapter 1. Patient Registries; 1. Introduction; 2. Current Uses for Patient Registries; 3. Taxonomy for Patient Registries; 4. Patient Registries and Policy Purposes; 5. Global Registries; 6. Summary; References for Chapter 1; Chapter 2. Planning a Registry; 1. Introduction; 2. Steps in Planning a Registry; 3. Summary; Case Example for Chapter 2; Case Example 1. Creating a Registry To Fulfill Multiple Purposes and Using a Publications Committee To Review Data Requests; References for Chapter 2 |
|
Chapter 3. Registry Design1. Introduction; 2. Research Questions Appropriate for Registries; 3. Translating Clinical Questions Into Measurable Exposures and Outcomes; 4. Finding the Necessary Data; 5. Resources and Efficiency; 6. Study Designs for Registries; 7. Choosing Patients for Study; 8. Sampling; 9. Registry Size and Duration; 10. Internal and External Validity; 11. Summary; Case Examples for Chapter 3; Case Example 2. Designing a Registry for a Health Technology Assessment; Case Example 3. Developing Prospective Nested Studies in Existing Registries |
|
Case Example 4. Designing a Registry To Address Unique Patient Enrollment ChallengesReferences for Chapter 3; Chapter 4. Data Elements for Registries; 1. Introduction; 2. Identifying Domains; 3. Selecting Data Elements; 4. Registry Data Map; 5. Pilot Testing; 6. Summary; Case Examples for Chapter 4; Case Example 5. Selecting Data Elements for a Registry; Case Example 6. Understanding the Needs and Goals of Registry Participants; Case Example 7. Using Standardized Data Elements in a Registry; References for Chapter 4; Chapter 5. Use of Patient-Reported Outcomes in Registries; 1. Introduction |
|
2. The Role of PROs in Registries3. What Methods Are Available To Collect PROs and Which Is Best?; 4. Which PRO Measure(s) Should Be Selected?; 5. Example of PRO Use in a Registry; Case Examples for Chapter 5; Case Example 8. Developing and Validating a Patient-Administered Questionnaire; Case Example 9. Using Validated Measures To Collect Patient-Reported Outcomes; Case Example 10. Challenges in the Collection of PROs in a Longitudinal Registry; Case Example 11. Collecting PRO Data in a Sensitive Patient Population; References for Chapter 5; Chapter 6. Data Sources for Registries |
|
1. Introduction2. Types of Data; 3. Data Sources; 4. Other Considerations for Secondary Data Sources; 5. Summary; Case Example for Chapter 6; Case Example 12. Using Claims Data Along With Patient-Reported Data To Identify Patients; References for Chapter 6; Section II. Legal and Ethical Considerations for Registries; Chapter 7. Principles of Registry Ethics, Data Ownership, and Privacy; 1. Introduction; 2. Ethical Concerns Relating to Health Information Registries; 3. Applicable Regulations; 4. Registry Transparency, Oversight, and Data Ownership; 5. Conclusions |
| Notes |
6. Summary of Privacy Rule and Common Rule Requirements |
|
Print version record |
| Subject |
Diseases -- Reporting.
|
|
Disease Notification
|
|
Diseases -- Reporting
|
| Form |
Electronic book
|
| Author |
Gliklich, Richard E
|
|
Dreyer, Nancy A
|
|
Leavy, Michelle B
|
| ISBN |
9781587634338 |
|
1587634333 |
|
