Page 15 - PATIENT REGISTRY DATA FOR RESEARCH: A Basic Practical Guide

these registry data and also to use them for research purposes. Besides that, it is important for

a researcher to obtain prior permission from the owners of registry data in order to ensure that

the researcher will abide by all the terms and conditions applicable to gaining access to such

registry data for research purposes, and also to be held responsible for maintaining the

confidentiality of such data as long as they are still having physical custody of these data.

In addition, the whole procedure of data preparation can involve a challenging process

since researchers will have to deal with many variables. There are several important

procedures for the data cleaning process which are necessary for preparing a quality data set

that is ready for analysis. Although all these are considered as the most basic procedures for

conducting research using secondary data, however these must still be highlighted for

research involving patient registry data as they deserve special attention in these

registry-based studies due to the complex nature of their data collection.

Figure 1.1: A common step-by-step process for conducting research using secondary data and
the focus of this book