Research Registry for Neonatal Lupus (RRNL)
The overall goal of the RRNL is to establish and maintain a database sufficiently rich to provide an invaluable resource to the academic community for translational research in the anticipation of curing this disease. Neonatal lupus is a model system for studying the potential role of autoantibodies in the pathogenesis of tissue injury in general. Understanding both the maternal and fetal contribution to risk of disease should provide insights on pathogenesis, diagnosis and therapy. Sufficient numbers of patients will facilitate better screening assays and clinical trials to evaluate evidence-based treatments. Moreover, because many mothers are indeed totally asymptomatic, neonatal lupus families offer a unique opportunity to study in parallel the natural history both of the autoantibody response and disease evolution. The RRNL and the RRNL Specimen Bank will thus serve as continued resources of patients and materials for basic and clinical studies conducted by approved investigators in the United States.
The RRNL collects identifying and diagnostic information on enrolled mothers and their children affected with congenital heart block (preferably diagnosed before or at birth in the absence of major structural cardiac defects), transient skin rash consistent with neonatal lupus, and/or hepatic or hematologic manifestations of neonatal lupus. Enrollment has been expanded to include:
- Unaffected siblings of neonatal lupus children
- Siblings of mothers who have a child/children diagnosed with neonatal lupus
- Fathers of a child/children diagnosed with neonatal lupus
- Maternal grandparents of a child/children diagnosed with neonatal lupus.
The Registry will continue to provide free SSA/Ro-SSB/La antibody testing to mothers of affected infants whose antibody status is not known.
We welcome inquiries from physicians and other healthcare professionals who treat mothers and their children who may be eligible for enrollment in the Registry.
For questions about the RRNL and to inquire about enrolling potential candidates in the RRNL, please contact the Research Coordinator, firstname.lastname@example.org.