Women with lupus and other related disorders produce certain antibodies in the blood. Some
women have these antibodies even if they have not yet developed symptoms of lupus or
Sjogren's syndrome. When these women become pregnant, they may pass the antibodies to their
infants. The infants may then develop a disease called neonatal lupus. The symptoms of
neonatal lupus include an abnormally slow heart beat (heart block) and a skin rash. This
registry collects information on women and infants affected by neonatal lupus as well as
other family members who may be healthy.
Neonatal lupus is a disease seen in babies born to mothers who have antibodies to SSA/Ro
and/or SSB/La proteins. The mother may have systemic lupus erythematosus, Sjogren's syndrome,
or be otherwise healthy. Heart block and a characteristic skin rash are the primary
manifestations of neonatal lupus.
The Research Registry for Neonatal Lupus was initiated in 1994 to help basic scientists and
clinicians better understand the cause of neonatal lupus and discover a cure. The Research
Registry is a central repository of patient information, sera, and DNA. The Registry provides
blood samples (kept anonymous) to scientists studying neonatal lupus. Information from the
registry forms the basis of family counseling and tracks important data such as recurrence
rates in subsequent pregnancies and the effects of treatments. The Research Registry also
serves as an educational resource for women who are eager to learn about this disease.
Women with a child affected by neonatal lupus may enroll in the Registry. Women can be self
referred or referred by their doctors. Siblings of women with a child affected by neonatal
lupus, fathers and maternal grandparents of children with neonatal lupus, and unaffected
siblings of a child with neonatal lupus are also invited to participate in this study. All
information on the mother and her family is confidential; only nonidentifying information
will be provided to researchers. Women interested in the registry will be sent articles and
educational materials about neonatal lupus, a consent form for the Registry, and an
enrollment questionnaire. Participants will be asked to sign a medical records release form.
Participants will also be asked to donate a blood sample for antibody testing and DNA
- Mother with antibodies to SSA/Ro, SSB/La, or ribonucleoproteins (RNP) OR Child of
mother with such antibodies who has neonatal lupus (congenital heart block, transient
skin rash, and/or hepatic or hematologic manifestations) OR Father of neonatal
lupus-affected child OR Maternal grandparents of neonatal lupus-affected child OR
Maternal aunts and uncles of neonatal lupus-affected OR Unaffected siblings of
neonatal lupus-affected child