Online Registration System

Neural tube defects are serious defects in the formation of the brain and spine that are either fatal or have long term health consequences. The formation of the neural tube occurs early in pregnancy in many cases before a woman realizes she is pregnant and long before her first prenatal visit.

Neural tube birth defects are a major cause of morbidity and mortality in Saudi Arabia's children and contribute substantially to long-term disability.

The KFSH&RC Neural Tube defect Registry was established to serve as a source of data on NTD, to estimate the magnitude of the disease, to determine the pattern and frequency of the various types of neural tube defects. Moreover, the registry aims to provide descriptive statistics and documentation of treatments, procedures and simple outcomes on NTD patients in the Kingdom.

For more information

THE DEPARTMENT OF BIOSTATISTICS and EPIDEMIOLOGY

King Faisal Specialist Hospital and Research Centre

http://rc.kfshrc.edu.sa/bssc/ntdr_new

Please direct all inquiries to
Shazia Naz Subhani
Head, Registries Core Facility,
Department of BESC, MBC-03,
King Faisal Specialist Hospital and Research Centre
P.O. Box 3354, Riyadh 11211
Kingdom of Saudi Arabia
Off:  + 966 1 442 4868
Fax: + 966 1 442 4542
E-mail: $2ssubhani@kfshrc.edu.sa
  

About

 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 or population-based disease registries. With a current strength of 13 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 Registry and Pan Arab Liver Transplant Registry. Congenital Heart defects Registry being the flag ship registry active since January 1998 has so far secured collaboration with Prince Sultan Cardiac Centre, Riyadh. Disable Children Association (DCA) and Riyadh Medical Complex (RMC), Riyadh has also joined the Neural Tube Defects program in collaboration with KFSH&RC. Patient registration from DCA has started since February 2006. Moreover, recently several national hospitals has joined the Epilepsy registry program of KFSH&RC. User training is on-going for all the new collaborating hospitals on registries software.
 
What are 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. They 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.  They are proved to be an important source of data enabling health care workers to assess and analyse the results of their therapeutic efforts, to optimise 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. Analysed data from the registries is also used for clinical and research purposes. The compiled, analysed, 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. They help health authorities to allocate resources for treatment and more important towards the prevention of a particular disease.
 
Purpose
  The purpose of Registries Core Facility is 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.
 
Our Mission
  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.
 
Our Vision
  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.
 
Disease Registries Registries Core Facility

is currently managing the following hospital-based and regional disease registries: 
Ms. Ahsan Yassen, Registrar (KFSH&RC, DCA)