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

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.

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.

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.

What are we aiming to achieve? 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.

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

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

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

Data Centralization Search Results Charts 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.

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

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

On-Line Applications Features Secured Access Data Entry / Updates / Retrieval Search engine Charts Statistical Reports Data downloads (data export feature) Administrative 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.

Collaborative Plans Country Regional City Level Hospital / Community

Collaboration better research… better health care!

Thank you!