Patient registries in medical science and clinical practice

Welcome to the e-learning faculty entitled Patient registries in medical science and clinical practice!

This course focuses on the theoretical basis for understanding Patient Registries. We hope that as you progress through the lessons, you will become more and more familiar with the key topics and the essentials of these databases.

Topics will embrace the entire process, divided into three main sections: registry establishment, maintenance, and analysis. The first part will introduce you to the aim of registries, the types of questions that this form of data collection can answer, details of case report forms, ethical considerations, IT background, data protection, and the role of contributors. The next section will include presentations on patient enrollment, data collection, and quality control.

 

Lectures:

 

Part I. of Registry course: Planning phase

 

  1. The purpose and rationale of the registry
  2. The clinical question
  3. Bias in registry analysis I.
  4. Bias in registry analysis II.
  5. Structured data collection
  6. Networking in science, conferences, presenting results, post publication
  7. Ethical approval for patient registries
  8. IT development
  9. Biobank sample collection
  10. Human and financial resources
  11. Registry regulations and data protection
  12. The purpose of international surveys
  13. Data collection for international survey

 

Part II. of Registry course: Running and analyzing a patient registry

 

  1. Patient enrollment
  2. Data collection and quality
  3. Maintaining a registry
  4. Feasibility, exploratory data analysis
  5. Statistical analysis plan
  6. Data structure 
  7. Descriptive statistics
  8. Data types, scales
  9. Comparative statistics
  10. Battle against confounding
  11. Article structure of observational studies
  12. Article structure - international survey
  13. Authorship policy
  14. Publication strategy
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