Page 56 - PATIENT REGISTRY DATA FOR RESEARCH: A Basic Practical Guide

Chapter 5 - Summary

This e-book/book has sought to provide a brief guide on how to conduct research by

using data obtained from a patient registry database. It can be a difficult task to deal with

patient's registry data because it revolves around major ethical issues pertaining to data

privacy and confidentiality issues (since these are sensitive data about each individual

patients). In addition, there are numerous variables and each with tons of data in a patient

registry that have rendered data handling much more difficult than that of the other types of

survey research. Therefore, this e-book/book attempts to provide an overview of the

framework for all the steps necessary to be taken by a researcher when conducting research

using data obtained from a patient registry database. It shall also serve as a simple guideline

which stipulates all the standard requirements that must be met for the purpose of obviating

major problems from cropping up during the subsequent statistical analysis of these registry

data.

The scope of this e-book/book is limited to discussion on data acquisition, data

preparation and approach for statistical analysis only. Hence, this e-book/book will not be

discussing the report writing which is always the final step in the research process. Since

patient registry databases can potentially answer dozens of research questions, thus there are

a myriad of different ways on how to discuss and present findings derived from the statistical

analyses. As an illustration, this e-book/book has listed at least 33 scientific papers published

in peer-reviewed journals about different types of research being conducted on data from

patient registry databases.

All these studies had also involved numerous types of patient registries, including

Adult Diabetes Control and Management (ADCM) Registry 2009 (currently known as

National Diabetes Registry (NDR)), National Eye Database (NED), The Malaysian National

Cardiovascular Disease Database (NCVD) registry, National Orthopaedic Registry Malaysia