A disease registry is an organized system that collects standardized data on a population with a particular disease. It includes demographics, diagnoses, treatments, and follow-ups. Registries can range from paper files kept by an individual doctor to complex online databases accessed across institutions. They provide quality goals and reminders to healthcare providers. Registries have clinical, technical, and analytical components and ensure confidentiality and privacy in data collection, management, and reporting. The quality of data in a registry determines its utility for research and improving healthcare processes.

1. By: Jawad Afzal

2. Patient Registry or
Disease Registry
an organized system that uses observational
study design to collect uniform and
standardized data to evaluate specified
outcomes for a population defined by a
particular disease and that serves one or
more predetermined scientific clinical and or
policy purposes.
will include Demograhics, Diagnosis
details, Treatments, and Follow ups.

4. In its simplest form, a disease registry could
consist of a collection of paper cards kept inside
"a shoe box" by an individual physician. Most
frequently registries vary in sophistication from
simple spreadsheets that can only be accessed by
a small group of physicians to very complex
databases that are accessed online across
multiple institutions.
They can provide health providers (or even
patients) with reminders to check certain tests
in order to reach certain quality goals.

5. Components of Registry
 Clinical arm ( Registrar, Clinical
Research Coordinator)
 Technical arm ( DB Developers,
System Analyst)
 Analyst ( Biostatistician )
 Confidentiality & Privacy
 Data collection
 Data management
 Data quality assurance
 Reporting

6. Confidentiality and Privacy
This is the backbone of the research
processes especially when we are dealing
with the patient care.
In a registry, it is maintained by the privileged
access to the registry. Only the small set of
people have the access to
the patient identifiers.

7. The quality of a Disease Registry is based on the quality
of data fed into it and all the processes involved in
updating it and keeping its integrity. In every registry
there is always a risk of "Garbage In, Garbage out” .
Sources of Data Collection
 Medical records
 Physician related documents
 HMIS ( MainFrame, Cerner, Centricity)

8. Data management
 It is the integrated system for collecting, cleaning,
storing, monitoring, reviewing, and reporting on
registry data which determines the utility of the data
for meeting the goals of the registry.
Quality assurance
It aims to assure that the data were, in fact,
collected in accordance with these procedures and
that the data stored in the registry database meet
the requisite standards of quality, which are
generally defined based on the intended purpose.

9. Audit of the Data
 Quarterly Audit
 Twice yearly Audit
 Yearly Audit
 Annual report ( that can be published
as a publication)

10. Benefits of Registry
 Advocates the healthcare and healthcare
system
 Maintains trends
 Improves healthcare processes within the
hospital and nationally
 Facilitates the data extraction, data
download and in turn, the analysis
 For the research papers periodic reports (
PermCaths during a specific period of time,
Biopsies , AVF created , transplanted) at a
single click
 Cost effectiveness
 Will channelize the research
 Management protocols can be made in the
light of the papers and reports

11. Why a Registry?
Data of the registry is electronic-
based , audited, clean and pure.

12. You cannot manage what you
cannot measure
And
Anything that can be measured
gets DONE.