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Background

Congenital rubella syndrome (CRS) is a major cause of severe birth and late onset defects worldwide. A national CRS registry was established in Oman to conduct long term follow-up of CRS cases.  

Methods

The CRS national registry includes all CRS cases reported to the Ministry of Health since 1980 and are based on the WHO CRS case definition. CRS patients received annual clinical assessments.

Results

Of 104 reported CRS cases, 85 (82%) were clinically or laboratory-confirmed. Out of the confirmed cases, 46 (54%) patients were successfully contacted and received clinical evaluation.   Twenty (24%) of the confirmed cases were lost to follow-up and 19 (22%) were deceased. Among deceased cases, 7 (28%) died from cardiovascular causes, 3 (12%) from meningitis/encephalitis, 2 (9%) from pneumonia, 1 (3%) from, head injury and 12 (48%) had unknown causes.

Out of the evaluable patients, 19 (41%) had late-onset symptoms manifestations of CRS detected from 8-23 years of age; 3 (16%) had endocrine function defects: 2 (11%) had thyroid disorders and 1 (5%) had type 2 diabetes mellitus, 3 (16%) had seizures disorders, One (5%) case each of systolic murmur, elevated blood pressure, pulmonary atresia and left ventricular failure were reported. Three (16%) hepatosplenomegaly, 1 (5%) late onset sensorineural hearing impairment, 1 (5%) hypospadias and 1(5%) autism (reported as CRS-related) 18 (39%) had cerebral palsy, 10 (22%) and 5 (11%) had severe to profound and moderate mental retardation were reported. respectively. Seventy two percent of the CRS cases survived up to 30 years.

Conclusions

Cardiovascular, neurological manifestations and endocrine function defect were the most common late CRS manifestations. The long survival of CRS cases were attributed to early medical and rehabilitation interventions. Identification and follow-up of the CRS cases provided an opportunity to assess late or unrecognised manifestations of congenital rubella and support earlier clinical intervention.

Keywords 

Congenital Rubella Syndrome; CRS; late manifestations of CRS; disability; Expanded Program on Immunization; Oman