Irish Epilepsy and Pregnancy Register

Data Collection Type
National data collections of health and social care in Ireland
Organisation

Beaumont Hospital Epilepsy Research Group, Royal College of Surgeons in Ireland

Year established

2001. 
2007 — amalgamated with UK epilepsy and pregnancy register.

Statement of purpose

Primary objectives:

  • 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.

Secondary objectives:

  • 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).
Coverage

National voluntary participation (currently in excess of 1,070 patients).

Description

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.

Data content

Includes: 

  • 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.
Data providers

General practitioners (GPs) of pregnant women with epilepsy; healthcare professionals of pregnant women with epilepsy.

Data collection methodology

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.

Data dictionary

Not available

Clinical coding scheme

Coding of pregnancy outcome malformations only in line with UK epilepsy and pregnancy register malformation grading.

Size of national collection

Approximately 50–100 records created on average annually.

Publication frequency

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 

Accessing data

No formal data requests procedure at present.

Open data portal access

No