WEPOD
NYU Langone Health, University of Pittsburgh, Brigham and Women's Health, Northwell Health (LIJ)
Observational, cohort study of WWE and age-matched healthy controls; goal of the study was to understand pregnancy and fertility outcomes in WWE; to enroll, WWE had to be planning pregnancy and thus off contraception for 6 months; during the study, WWE tracked seizures prior to pregnancy and during pregnancy (if pregnancy occurred) and prior to pregnancy, WWE also tracked menstrual cycles.
Dates of Data Collection:
Data collection was from November 2010 to May 2015
How many participants have a diagnosis of epilepsy in the cohort?
How were they diagnosed or classified as having epilepsy?
Confirmed by neurologist or epileptologist
How many were having approximately one seizure a month or more?
Do most or all participants have a menstrual cycle diary indicating day 1 of menses?
Yes, for all 89 WWE enrolled, menstrual cycles were tracked for entirety of pre-pregnancy phase; patients had to log something every day (no flow, spotting, or flow)
What is the minimum (and/or average) cycle diary length?
All WWE were required to track seizures through the end of pregnancy and for the full duration of pre-pregnancy phase; if no pregnancy, women tracked for up to 12 months; range of seizure/menstrual tracking for either the PRE-PREGNANCY phase or in women who did not get pregnant and did not d/c the study early was 1-15 months, avg of 6 months; a lot of women who got pregnant had only 1-2 months of pre-pregnancy data
Do most or all participants have a seizure diary or seizure tracking system?
What is the minimum (and/or) average length of the seizure tracking/report?
Minimum of 1 month for some participants, some up to 15 months of tracking, but not all had seizures
What are the other types of data this study collected?
e.g. a control cohort, EEG (clinical or scientific), imaging, blood tests, ovulation testing, questionnaires.
References where the cohort data has been presented:
Results of WEPOD study: Pennell PB et al., JAMA Neurol 2018: 75 (8). In addition, results of follow up analysis of catamenial patterns from WEPOD data set: Voinescu et al., Epilepsia 2023: 64 (9)
Summary of why this data may be useful in catamenial epilepsy research:
Menstrual cycle tracked concurrently with seizure frequency; seizure frequency both prior to and during pregnancy for some individuals to track changes in seizure frequency across pregnancy; questionnaire data available on each patient's perceived catamenial seizure pattern
Summary of requirements for data reuse:
Unclear at present, need to verify with original study authors first
elaine.sinclair@vcuhealth.org; jacqueline.french@nyulangone.org; pennelpb@upmc.edu
