Registries Core Facility

Established in year 2000 this core facility in the Department of Biostatistics, Epidemiology and Scientific Computing is charged with the responsibility of setting up, maintaining, and development of hospital-based as well as regional and population-based disease registries. With a current strength of 15 members we are running Congenital Heart Defects Registry, Neural Tube Defects Registry, Cleft Lip / Palate and Craniofacial Anomalies Registry, Neuromuscular Disease Registry, Epilepsy Registry, Saudi TAFT Registry and Thromboembolic Disorders Registry. We are also providing technical support to National Diabetes and Pan Arab Liver Transplantation Registries. Congenital Heart Defects Registry being the flag ship registry, active since January 1998, has so far secured collaboration with Prince Sultan Cardiac Centre - Riyadh, Maternity Children Hospital - Dammam and King Fahad Medical City - Riyadh. For the Neural Tube Defects Registry the expansion plans has secured collaborations with Disable Children Association (DCA) - Riyadh, Maternity & Children Hospital - Dammam, King Faisal Specialist Hospital - Jeddah, Riyadh Medical Complex (RMC), Al Qunfida Hospital - Medina and King Fahad University Hospital- Al-Khobar.

Recently, several national hospitals has joined the Epilepsy registry program of KFSH&RC. User training is on-going for the new collaborating hospitals for the registry projects.

is to provide leadership in establishing and maintaining quality disease registries in collaboration with other organizations, and to develop standards and principles for effective administration for these information systems in the region.

is to emerge as an authority in establishing, developing and maintaining hospital-based as well as regional disease registries in the Kingdom of Saudi Arabia.

are to be a reliable, valid, and timely information source for the researchers and other agencies & institutions seeking guidance and consultation in the establishment of disease registries.

Disease registries play a vital role in the healthcare system of a community. They are designed and developed as a resource to facilitate management.

Registries serve as a surveillance tool to collect data on the incidence and prevalence of diseases in a hospital or in a community, identify risk factors and suggest preventive measures. Disease registries are proved to be an important source of data enabling health care workers to assess and analyze the results of their therapeutic efforts, to optimize treatment, improve outcomes and reduce complications. This leads to an overall improvement in patient care and health care planning. Disease registries also serve as a database for future research and help answer many important questions in the relevant area of healthcare. Analyzed data from the registries is also used for clinical and research purposes.

The compiled, analyzed, classified and codified data in the registries serve as a valuable source for scientists interested in the causes, diagnoses and treatments for relevant diseases. Disease registries are also of use to the Ministry of Health, medical practitioners, and specialists as well as researchers – local and international. These registries help health authorities in decision making e.g. to allocate resources for treatment and more importantly towards the prevention of a particular disease.