Congenital Conditions Pregnancy-related Conditions (viral infection in fetus or newborn)
Congenital Rubella Syndrome (CRS)
The information on the Rare Awareness Rare Education (RARE) Portal is intended for educational purposes only and does not replace professional advice.
Rare diseases typically display a high level of symptom complexity and variability. Individuals diagnosed with the same rare disease may be impacted differently and each person’s experience is unique. Please seek support from qualified healthcare professionals to learn more about the most suitable care and support options for you.
For more information on CRS, please refer to the Genetic and Rare Diseases (GARD) Information Center – CRS1, Australian Government Department of Health resource on Rubella2 and The Australian Immunisation Handbook – Rubella.3
There are currently no known organisations in Australia specifically for this rare disease. If you know of any rare disease organisation/s supporting people living with CRS in Australia, please let us know via the Contribute page. If you are interested in starting an Australian organisation for people living with CRS, please see Engaged, Ethical and Effective: A Guide for Rare Disease Organisation Leaders in Australia.
If you are aware of any additional information that may benefit stakeholders with an interest in this page, or if you notice any broken links or misleading information, please let us know via the Contribute page.
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There may be special considerations for the emergency management of individuals living with congenital rubella syndrome (CRS) or pregnant women with a rubella infection presenting to emergency departments.
Clinical Care Guidelines
There is an available practice guideline prepared by SA Health (SA Maternal & Neonatal Clinical Network) – Rubella infection in pregnancy (in South Australian Perinatal Practice Guidelines); please note that this was last updated in 2015.
Congenital Rubella; Rubella Congenital
KA62.8 Congenital rubella syndrome
Congenital rubella syndrome (CRS) is a group of birth defects that occur in a baby whose mother was infected with the virus that causes German measles (rubella) during pregnancy.1 Maternal rubella infection can lead to spontaneous miscarriage, fetal infection, stillbirth, fetal growth restriction or the birth of a child with CRS.2 The most common defects associated with CRS are deafness, ocular abnormalities and heart problems. There may be other complications associated with CRS, some of which may occur later in life.
The incidence of babies born with CRS has reduced since the development of the rubella vaccine. In Australia, the rubella vaccine is available as the measles, mumps and rubella (MMR) or with varicella (MMRV) vaccines. MMR vaccination is part of the National Immunisation Program (NIP) Schedule and recommended for all women of child-bearing age who have no or low antibody levels to rubella (seronegative).3 Risk groups in Australia more likely to be seronegative include women born overseas who have not been vaccinated, Aboriginal and Torres Strait Islander women from rural and remote communities, and women 35 years of age or older who may have declining immunity.2 Rubella vaccination is contraindicated for women who are already pregnant, which means women should not receive the vaccination during pregnancy.3
It is best to speak to your medical team to learn more about the symptoms and complications of congenital rubella syndrome (CRS).
A rubella infection during pregnancy can result in a baby being born with congenital rubella syndrome (CRS).1 The risk of CRS in the developing baby is higher if the mother has a rubella infection within the first 3 to 4 months of pregnancy and reduces after the 4th month of pregnancy.1,2
Diagnosis of rubella infection can be made through a blood test for rubella antibodies.
Infants born with abnormalities, such as deafness, mental retardation, heart defects and cataracts, may have had an undetected rubella infection acquired before birth.4 Antibody testing can be used to confirm a congenital rubella syndrome (CRS) diagnosis.
Pregnant women who have been in contact with rubella or who have clinical features consistent with rubella-like illness should be tested. Pregnant women who test positive for a rubella infection should be offered counsel by their medical team about the risks to the fetus and options for management of rubella, including management in infants and information about CRS.4
In cases where maternal rubella infection has been detected or suspected, fetal diagnosis can be made by antenatal testing.4 Please consult your medical team to find out more about the antenatal testing available for specific stages of pregnancy and the risks involved. Newborns should be examined for clinical features of CRS and tested for the rubella infection by antibody testing, viral polymerase chain reaction (PCR) tests and swabs.4
More information about rubella antibody tests can be found at Pathology Tests Explained: Rubella.
It is best to speak with your medical team to learn more about the possible treatment or management of congenital rubella syndrome (CRS) and associated symptoms. Treatment will depend on an individual’s specific symptoms and complications.
Newborns who have tested positive to the rubella virus should have ophthalmology, cardiac and hearing assessments following birth.4 They should also have further follow-up assessments every 3 to 6 months for the first 12 months of their life to detect any emerging abnormalities, such as deafness, neurological deficiencies, epilepsy, cataracts, retinopathy, tooth defects and growth restriction.4
Healthcare professionals involved in the treatment of congenital rubella syndrome (CRS) may include general practitioners (GP), paediatricians, infectious disease specialists, ophthalmologists (eye specialists), and neurologists. The need for different healthcare professionals may change over a person’s lifetime and may extend beyond those listed here.
Please visit Australian Clinical Trials to learn about clinical trials for congenital rubella syndrome (CRS) in Australia; there may not be any clinical trials currently available.
Information regarding clinical trials for CRS in other countries can be found at ClinicalTrials.gov; there may not be any clinical trials currently available.
It is best to discuss your interest in any clinical trials with your medical team to determine suitability and eligibility.
Rare Disease Organisation(s)
There are currently no known rare disease organisations/s supporting people living with congenital rubella syndrome (CRS) in Australia. If you are aware of any CRS organisations in Australia, please let us know via the Contribute page.
Please see the National and State Services pages.
Please see the ‘Mental Health’ sections listed on the National and State Services pages.
Rubella is a nationally notifiable disease, which means medical practitioners or laboratories are required, by law, to report cases of rubella infection detected in pregnant women to their local health department/Public Health Unit.
Further information about rubella vaccination, including other contraindications, can be found in The Australian Immunisation Handbook: Rubella vaccine.
Measles & Rubella Initiative is a global partnership to stop measles and rubella, which is led by the American Red Cross, the United Nations Foundation, the U.S. Centers for Disease Control and Prevention, United Nations Children’s Fund (UNICEF) and the World Health Organization.
- Genetic and Rare Diseases (GARD) Information Center. Congenital rubella. Accessed June 2, 2022. https://rarediseases.info.nih.gov/diseases/4744/congenital-rubella
- Australian Government Department of Health. Rubella. Accessed June 2, 2022. https://www.health.gov.au/resources/pregnancy-care-guidelines/part-f-routine-maternal-health-tests/rubella
- Australian Technical Advisory Group on Immunisation (ATAGI). Rubella. In: Australian Immunisation Handbook, Australian Government Department of Health. Canberra; 2018. Available from: https://immunisationhandbook.health.gov.au/contents/vaccine-preventable-diseases/rubella#clinical-features
- South Australian Perinatal Practice Guidelines Workgroup. Rubella infection in pregnancy. In: South Australian Perinatal Practice Guidelines, South Australian Government Department of Health. Adelaide; 2015. Available from: https://www.sahealth.sa.gov.au/wps/wcm/connect/d81813804eedb835b2b8b36a7ac0d6e4/Rubella+Infection+in+Pregnancy_Sept2015.pdf?MOD=AJPERES&CACHEID=ROOTWORKSPACE-d81813804eedb835b2b8b36a7ac0d6e4-ocRCZCE
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