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Neural Tube Defects Registry
First Multi-institutional Report 2006
King Faisal Specialist Hospital & Research Centre, Riyadh
Registration from (2000-2006)
and
Disable Children Association, Riyadh
Registration from (2006)
Executive Summary
The Neural Tube Defects Registry
The King Faisal Specialist Hospital and Research Centre (KFSH&RC) established a registry in March 2000 for all patients with neural tube defects presenting to the hospital. The registry is a coordinated collaboration among the departments of Neurosciences Biostatistics, Epidemiology and Scientific Computing (BESC), Pediatrics, Orthopedics, Urology, and Obstetrics and Gynecology (Ob-Gyn). The development of the registry is meant to provide a better understanding on disease occurrence and natural history of the disease. Last year we started collaborating with the Disabled Children's Association in an effort to develop this registry nationally.
Data in this report is divided into two parts. The first covers data on the Disabled Children's Association and the second on King Faisal Specialist Hospital and Research Centre. The Disabled Children's Association
A total of 39 patients were registered from March 1 to December 31, 2006 in the Neural Tube Defects registry of the Disabled Children's Association. The registry sample are all Saudi's with (n=21; 54%) females and (n=18; 46%) males. Most of the patients are attending school (n=10; 63%). Out of the 10 patients 8 are going to primary school.
Despite the sonography most of the defects were reported to be first diagnosed at birth and during third trimester (n=15; 43%) and (n=12; 34%) respectively. The majority of the patients are diagnosed with Spina Bifida Aperta and Hydrocephalus (n=31; 80%). Among patients who were born with hydrocephalus (n=19; 66%) were diagnosed antenataly and (n=10; 35%) were diagnosed after birth. The majority (n=24; 67%) had operation of the primary defect on the first and second day of life. Among the 31 patients requiring VPS insertion (n=25; 89%) patients had the VP inserted after the repair None of the women in the registry sample took folic acid before conception and (n=25;
77%) of the mothers did not take any folic acid during the first three months of
pregnancy. Around half the number of parents (n=19; 53%) stated they were not related, while (n=17; 47%) stated that they were related. Most of the patients (n=34; 94%) did not have a first degree relative with NTD. Moreover (n=27; 79%) patients did not have blood relatives with NTD.
The King Faisal Specialist Hospital and research centre
A total of 444 cases were registered from King Faisal Specialist Hospital and Research
Centre from October 2000 to December 31, 2006. A total of (n=416; 94%) are Saudis with (n=202; 46%) males and (n=242; 55%) females. Twenty seven (n=27; 53%) patients are attending school, with (n=20; 39%) who did not reach school age. Around (n=20; 74%) of these patients are attending primary school. The majority of patients (n=50; 98%) are not employed and did not reach employment age. Most of the patients cannot move around because they are handicapped (n=37; 73%), and (n=11; 22%) of these patients move around independently in the house and community.
Among the mothers who had ultrasound, (n=306; 72%) of the mothers reported that their children were diagnosed with NTD at birth and (n=76; 18%) during the third trimester. Out of the 444 patients (n=271; 61%) had spina bifida aperta with hydrocephalus. With the relevant population being those women who had ultrasound, (n=109; 48%) were diagnosed with hydrocephalus before birth and (n=118; 52%) were diagnosed after birth.
The majority of patients underwent the primary operation within the first three days of life (n=219; 53%). Around (n=268; 61%) had VPS inserted, while (n=174; 39%) did not have any. Among patients who had VPS inserted (n=195; 76%) had it after repair of the defect. The majority of our registry patients did not sustain any fractures (n=44; 88%). A large number of mothers did not take folic preconception (n=407; 99%). The first trimester (n=348; 87%) had no folic acid intake as well, with (n=45; 11%) not taking this vitamin regularly. A good number of parents declared they were not related (n=243; 57%), while (n=180; 43%) declared they were. The vast majority of patients did not have first degree relatives with NTDs (n=418; 98%). Also a significant percentage of patients (n=403; 95%) did not have blood relatives with NTD.
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