This document discusses disease registries and the benefits of centralized data. It explains that disease registries collect uniform clinical and research data from multiple sources to study outcomes for populations with specific diseases or exposures. Centralizing registry data provides several advantages, including easier data entry and analysis across locations, more robust research on risk factors and disease patterns, and quicker decision making for health managers and researchers. The document advocates for web-based registry software to facilitate anytime access to real-time centralized data without geographical boundaries, allowing greater data sharing and collaborative research efforts.

1. Research using Registries
Centralization and Data Dynamics
Shazia Naz Subhani
Senior IT Specialist, Bioinformatician
Project Manager Saudi Human Genome Program, Riyadh, Saudi Arabia

2. What are Disease Registry
Disease registry is defined as an organized system that uses
observational study methods to collect uniform data (clinical
and other) to evaluate specified outcomes for a population
defined by a particular disease, condition, or exposure, and
that serves a predetermined scientific, clinical, or policy
purpose(s).
A clinical registry in general is a comprehensive repository of
clinical and research data which comprises of data sources
like inpatient hospitalizations, medical health records,
emergency departments, clinics, risk factors and long-term
care evaluations.

3. Goals for Designing Registry
• To provide a state of the art platform for centralized
data entry, updates, reporting and analysis.
• Provide disease prevalence estimates to enable better
planning for social and medical services.
• Identify the epidemiology of a specific diseases and it’s
related problems.
• Promote research into risk factors of the disease.
• To provides a centralized data source to researchers
and healthcare managers for quick decision making.

4. Objectives
• To obtain the incidence, prevalence and patterns of a
diseases and related diseases in any specific community or
country.
• To identify the risk factors associated with that disease
and related diseases in a community or country.
• To document the treatment procedures and assessment of
treatment outcome.
• To determine the economic burden of the disease and
forecast trends using available technology and
information.

5. Health Research data has needs of evaluation, reporting,
mapping and presentation in a way that:
 secures the privacy and confidentiality of data
 assists policy and decision makers to
 make accurate and timely decisions
 allocate required resources
 take necessary measurements to address
health problems.
What are we aiming to achieve?

6. Uses of Research Data
 Spin-off studies
 Resource allocation
 Health planning
 Evaluation of clinical and public health programs
Health decisions are becoming increasingly evidence based

7. Web-based registries software
offers an anytime-anywhere access
to the centralized real-time data,
thereby removing geographical
boundaries and allowing registries
extension on national and
international levels

8.  Easy internet connection.
 Secured login and passwords.
 On-line data entry, update and retrieval.
 On-line data search, charts, reports.
 Quick decision making
Why web based registry?

9. Data Centralization
Search ResultsCharts
Data Entry Data Updates
Statistical Reports
Data Export
Simultaneous data entry from various locations along with smooth generation of
statistics, search results and data export for further analysis.

10. Centralized Data Concepts
Database
Server Machine
Hospital - 1
Hospital - 3
Hospital - 2
• Data Entry/Updates
• Charts
• Search
• Reports Generation

11.  Analysis for risk factors
 geography
 families
 environmental & genetic
 Health Services
 prevention efforts
 educational efforts
 resource allocation
Centralized Data Concepts Continued…..

12. On-Line Applications Features
The use of web-application removes all geographic boundaries and access
limitations, making it possible to be used world wide with secured user id and
password.
There is always a complete segregation of data access and data download among
various collaborators and user levels.
Web applications for research are easy to use for quick decision making and
resource management.
 Secured Access
 Data Entry / Updates / Retrieval
 Search engine
 Charts
 Statistical Reports
 Data downloads (data export feature)
 Administrative features

13. Collaborative Plans
Country
Regional
City Level
Hospital / Community

14. Collaboration
better research…
better health care!

15. Thank you!