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Objective To determine the current risks of infertility and impaired fecundity as well as the live birth/pregnancy ratio among women with epilepsy (WWE) in the USA and whether antiepileptic drug (AED) use is a factor. Methods These retrospective survey data come from the 2010‐2014 Epilepsy Birth Control Registry (EBCR) Web‐based survey of 1000 WWE in the USA, aged 18‐47 years, who provided demographic, epilepsy, AED, reproductive, and contraceptive data. We report risks of infertility and impaired fecundity, live birth/pregnancy ratio, and whether outcomes differ by AED use or category versus No AED. Results A total of 978 of the 1000 USA WWE reported reproductive data; 373 WWE had 724 pregnancies and 445 births. An additional 38 WWE (9.2%, 95% confidence interval [CI] = 6.7‐12.4%) tried to conceive but were infertile. A total of 72.5% had a live birth outcome for their first pregnancy, 89.0% had at least one live birth for their first two pregnancies, and 61.6% had two live births for their first two pregnancies. Eighty‐four of 406 WWE (20.7%, 95% CI = 17.0‐2.9%) had impaired fecundity. The risk of impaired fecundity trended higher on AED polytherapy than on No AED (risk ratio [RR] = 1.79, 95% CI = 0.94‐3.11, P = .08). The ratio of live birth/unaborted pregnancy (445/594, 74.9%) was similar among WWE on No AED (71.3%), AED monotherapy (71.8%), and polytherapy (69.7%). None of the AED categories differed significantly from No AED. Note that glucuronidated AED (lamotrigine), which had the highest ratio of live birth/pregnancy (89.1%), compared favorably to enzyme‐inhibiting AED (valproate), which had the lowest (63.3%; RR = 1.41, 95% CI = 1.05‐1.88, P = .02). Significance The EBCR finds 9.2% infertility risk and 20.7% impaired fecundity risk among WWE in the USA. Impaired fecundity trended higher on AED polytherapy than on No AED. Live birth/pregnancy ratio was higher with the use of lamotrigine than valproate. These findings may provide WWE a more objective basis for pregnancy planning.

If unintended pregnancy is common among women with epilepsy and is associated with increased risk of spontaneous fetal loss (SFL), it is important to develop guidelines for safe and effective contraception for this community. OBJECTIVE To assess whether planned pregnancy is a determinant of SFL in women with epilepsy. DESIGN, SETTING, AND PARTICIPANTS The Epilepsy Birth Control Registry conducted this web-based, retrospective survey between 2010 and 2014. It gathered demographic, epilepsy, antiepileptic drug (AED), contraceptive, and reproductive data from 1144 women with epilepsy in the community between ages 18 and 47 years. Data were analyzed between March 2018 and May 2018. MAIN OUTCOMES AND MEASURES The primary outcome was the risk ratio (RR) with 95% confidence intervals for SFL in unplanned vs planned pregnancies. The secondary outcome was the identification of some potentially modifiable variables (maternal age, pregnancy spacing, and AED category) of SFL vs live birth using binary logistic regression. RESULTS The participants were proportionally younger (mean [SD] age, 28.5 [6.8] years), and 39.8% had household incomes of $25 000 or less. Minority women represented only 8.7% of the participants. There were 530 of 794 unplanned pregnancies (66.8%) and 264 of 794 planned pregnancies (33.2%). The risk for SFL in 653 unaborted pregnancies in women with epilepsy was greater for unplanned (n = 137 of 391; 35.0%) than planned (n = 43 of 262; 16.4%) pregnancies (RR, 2.14; 95% CI, 1.59-2.90; P < .001). Regression analysis found that the risk for SFL was greater when planning was entered alone (odds ratio [OR], 2.75; 95% CI, 1.87-4.05; P < .001) and more so when adjusted for maternal age, interpregnancy interval, and AED category (OR, 3.57; 95% CI, 1.54-8.78; P = .003). Interpregnancy interval (OR, 2.878; 95% CI, 1.8094-4.5801; P = .008) and maternal age (OR, 0.957; 95% CI, 0.928-0.986 for each year from 18 to 47 years; P = .02), but not AED category, were also associated. The risk was greater when interpregnancy interval was less than 1 year (n = 56 of 122; 45.9%) vs greater than 1 year (n = 56 of 246; 22.8%) (RR, 2.02; 95% CI, 1.49-2.72; P < .001). Relative to the younger than 18 years cohort (n = 15 of 29; 51.7%), the risks were lower for the intermediate older cohort aged 18 to 27 years (n = 118 of 400; 29.5%; RR, 0.57; 95% CI, 0.39-0.84; P < .004) and the cohort aged 28 to 37 years (n = 44 of 212; 20.8%; RR, 0.40; 95% CI, 0.26-0.62; P < .001) but not significantly different for the small number of participants in the aged 38 to 47 years cohort (n = 3 of 12; 25.0%). No individual AED category's SFL frequency differed significantly from the no AED category. CONCLUSIONS AND RELEVANCE The Epilepsy Birth Control Registry retrospective survey finding that unplanned pregnancy in women with epilepsy may double the risk for SFL warrants prospective investigation with outcome verification.

ObjectiveTo determine (1) the proportion of women with epilepsy (WWE) at risk of unintended pregnancy who use highly effective contraception, (2) demographic predictors, and (3) folic acid (FA) use.MethodsThese cross-sectional data come from 311 US WWE, 18–47 years, who participated in the Epilepsy Birth Control Registry (EBCR) web-based survey in 2017. They provided demographic, epilepsy, antiepileptic drug (AED), contraceptive, and FA data. We report frequencies of highly effective contraception use and use logistic regression to determine demographic predictors. We report the proportion who take FA.ResultsA total of 186 (59.8%) of the 311 WWE were at risk of unintended pregnancy. A total of 131 (70.4%) used a highly effective contraceptive category; 55 (29.6%) did not. An additional 13 (7.0%) used a combination of generally effective hormonal contraception with an enzyme-inducing AED, which poses increased risk of unintended pregnancy. Overall, 68 (36.6%) of the 186 WWE at risk did not use highly effective contraception. Increasing income (p = 0.004) and having insurance (p = 0.048) were predictors of highly effective contraception. A total of 50.0% took FA supplement. There was no significant difference in relation to the use or lack of use of highly effective contraception.ConclusionA total of 36.6% of WWE in the EBCR did not use highly effective contraception and 50.0% did not take FA in 2017 despite the important negative consequences of unintended pregnancy on pregnancy outcomes. There is a need for more readily available information and counseling on safe and effective contraception and FA use for this community.

To determine whether there is a relationship between the age of seizure onset and the age of menarche. Methods: 1144 women with epilepsy (WWE) in the community, ages 18-47 years, provided web-based survey data. We compared the frequencies of the individual differences between their ages of seizure onset and menarche to each other and chance. We determined whether the age of menarche is a predictor of the age of seizure onset and the percentage of the variance that menarche explains. We used two-step cluster analysis to autoidentify a cluster of years relative to the age of menarche that showed the greatest predilection for seizure onset. Results: Average age of menarche was 12.55 [95% CI: 12.45-12.65]. It was greater in WWE who developed seizures before versus after menarche (12.70 [12.54-12.86] v 12.42 [12.30-12.54], p = 0.006). More WWE had seizure onset during the year of menarche than during any other year (8.3% v expected 2.1%; p < 0.0001). Menarche, however, explained only 1% of the variance. Seizure onset frequencies were greatest for an autoidentified cluster that spanned 2 years before to 6 years after menarche and subsumed 49.3% of seizure onset. Conclusion:Although the results indicate a significant relationship between the age of seizure onset and the age of menarche, the broader auto-identified perimenarchal cluster that subsumes 49.3% of seizure onset suggests that research target the potential role of the great increase in adrenarchal, as well as gonadarchal, neuroactive steroids that modulate neuronal excitability and seizures during that span.These retrospective data came from the Epilepsy Birth Control Registry (EBCR) web-based survey of 1144 WWE in the community, ages 18-47 years, who provided demographic, epilepsy, antiepileptic drug (AED), reproductive and contraceptive data [8]. We conducted the EBCR survey, located at epilepsybirthcontrolregistry.com, between 2010-2014. The Western Institutional Review Board approved the study. All subjects provided online consent prior to gaining access to the survey. Referral sources included epilepsy organization websites, social