Irish Epilepsy and Pregnancy Register
Beaumont Hospital Epilepsy Research Group, Royal College of Surgeons in Ireland
2007 — amalgamated with UK epilepsy and pregnancy register.
- to establish an ongoing nationwide prospective registry of epilepsy and pregnancy in the Republic of Ireland, which will have close links with the UK registry based in Belfast
- to establish the relative safety of the individual antiepileptic drugs with reference to major malformations in the offspring of women with epilepsy.
- to establish whether seizure frequency is related to adverse outcome in pregnancy
- to establish the rate of pre-conceptual folic acid administration in women with epilepsy and whether this beneficially affects outcome
- to educate people about epilepsy and pregnancy by giving pre-conceptual, pregnancy and post-pregnancy advice (related to epilepsy).
National voluntary participation (currently in excess of 1,070 patients).
The Irish epilepsy and pregnancy register was set up to register all women with epilepsy who are currently pregnant in Ireland. The register was set up to determine the safest strategies for the treatment of women with epilepsy who are currently pregnant or planning a pregnancy.
- mothers’ details including: name; address; contact number; nationality; date of birth; gestation (weeks) at registration; expected date of delivery; previous past pregnancies
- epilepsy details of mother including: date of onset of epilepsy; seizure type; aetiology if known; seizure during pregnancy seizure type; antiepileptic drug (AED) history (current and three months prior to conception)
- folic acid details include: was it prescribed; was it taken preconceptually; dose of folic acid; duration of folic acid
- other details include: general practitioner (GP) details; smoking status; where heard about register; who registered woman with epilepsy to register; whether currently attending a specialist for their epilepsy
- baby’s details include: date of birth; gestational age at birth; gender; birth weight; method of delivery; outcome of pregnancy; birth defect present; nature of defect if present.
General practitioners (GPs) of pregnant women with epilepsy; healthcare professionals of pregnant women with epilepsy.
Pregnant women can either self-register or a referral is sent from the GP or other health professionals. The forms are available from the following website (http://www.epilepsypregnancyregister.ie/join%20the%20register.html). Written consent is required from all women when registering. Neurologist or other health professional will do a follow-up telephone registration with pregnant woman. Data is collected over the telephone or face to face at clinics.
Data is collected and stored electronically with a paper trail. Three months after the estimated date of delivery, the patient’s GP is sent a further questionnaire asking for obstetric history, present and previous, and details of the outcome of this pregnancy. If there is any abnormal outcome, specific details will be requested. Future neurodevelopment of the child may be assessed, if appropriate.
Coding of pregnancy outcome malformations only in line with UK epilepsy and pregnancy register malformation grading.
Approximately 50–100 records created on average annually.
Results are currently combined with UK epilepsy and pregnancy register and published. Data presented at national and international conferences. There is a future plan to report total numbers registered to date on the website. http://www.epilepsypregnancyregister.ie/Publications.html
No formal data requests procedure at present.