Background/Purpose: Neonatal Lupus Erythematosus (NLE) is an acquired autoimmune disorder associated with the transplacental passage of maternal anti-Ro and/or anti-La antibodies. NLE manifestations include cardiac, dermatologic, hepatic, hematologic, and macrocephaly. Previous studies have suggested that children born to anti-Ro/La antibody positive mothers with a rheumatic disease, might be at greater risk of developing autoimmune and non-autoimmune diseases, as children or young adults. Little is known about the long-term outcomes of infants born to anti-Ro/La antibody positive mothers irrespective of maternal rheumatic disease status. The aim of this study was to determine the prevalence of autoimmune and non-autoimmune diseases in children born to anti-Ro/La positive mothers, both with and without NLE manifestations.
Methods: We conducted a cohort study of infants seen in the NLE clinic at SickKids Hospital. Infants born to anti-Ro/La antibody positive mothers in the Greater Toronto Area were referred to the NLE clinic. We invited parents of patients ≥ 1y of age to complete a follow-up questionnaire via REDCap survey link. The survey included questions about autoimmune rheumatic and non-rheumatic disease, allergic, neurodevelopmental and neuropsychiatric diagnoses. Descriptive statistics were used for demographic characteristics, clinical features of NLE and outcomes.
Results: Since study launch in November 2019, we have sent 155 surveys with a completion rate of 50% (n=77). Of the respondents, the median age at time of the survey was 4 years (IQR: 3, 7 years): 43% female (n=33). Of the 77 children, 70% (n=54) were born to women with rheumatic disease. SLE was the most frequent rheumatic disease reported, 48% (n=37). Thirty-nine percent (n=30) of the children had NLE manifestations: hepatic 77% (n=23), hematologic 47% (n=14), dermatologic 17% (n=5), neurologic 10% (n=3), and cardiac involvement 10% (n=3). Frequency of reported diseases/conditions are described in Table 1. Allergic diseases were the most frequent reported at 18% (n=23), and among those, eczema was most common at 78% (n=14). Two patients (3%) had developed autoimmune diseases (arthritis and type 1 diabetes).
Conclusion: We have observed an excellent response rate of 50% with the launch of our long-term outcome study of children born to women with positive anti-Ro/La antibodies. Allergic disease was the most frequent non-autoimmune disease in our population. Since autoimmune diseases usually present at an older age, we were unable to conclude the prevalence of autoimmune diseases in our population. We will continue recruiting participants, including patients older than 18 years of age. Since approximately 800 patients have graduated from the NLE clinic, we expect to enrol 400 participants. We plan to examine the risk of developing autoimmune and non-autoimmune diseases between children with and without NLE manifestations.
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