Objective: To introduce the International PregnancieS and Parkinson’s Registry (www.PregSpark.com).

Background: Pregnancy in Parkinson’s disease (PD) is rare, but with PD being the fastest growing neurodegenerative disease worldwide, increasing maternal age and earlier recognition of PD, this combination will be more common. Little is known about neither the impact of pregnancy on PD, nor on the impact of PD on pregnancy, maternal and infant health, and birth outcomes. Pregnancy in PD requires a multidisciplinary approach, but guidelines lack to adequately guide and support these women through periconceptional period, pregnancy, delivery, and lactation. This leaves women with PD with uncertainties during a vulnerable life phase. Therefore, making decisions regarding future pregnancies after diagnosis can be an insecure and anxious process.

Method: We have built an international, online registry on pregnancies and PD in co-creation with women with PD.

Results: From June 2024 pregnant women with PD can enroll at www.PregSpark.com, which is globally accessible. The registry is based on self-reported data using web-based questionnaires. Participants are invited to fill in maximally eight questionnaires during and after pregnancy. The number of questionnaires depends on the moment of enrollment. Women can enroll from conceiving up to eight weeks postpartum. Data will be collected up to 24 months postpartum. Questionnaires cover pre-existing health-related topics (pregnancy history, PD history, medication use, physical activity, and general health), health status throughout pregnancy (e.g., pregnancy complications, PD related topics, medication use, and physical activity) and health status after pregnancy (delivery, birth outcomes, child development).

Conclusion: This registry on pregnancy and PD is essential to fill the current knowledge gap. To collect data on as many pregnancies in PD as possible, we will enroll pregnant women with PD from all over the world, using accessible web-based surveys. Previous studies using web-based surveys with self-reported data have shown this method validly collects data among pregnant women. The collected data will allow the development of guidelines concerning the periconceptional period, pregnancy, delivery, and breastfeeding in women with PD and provide these women with the information they need to be able to make an informed decision regarding (future) pregnancies.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/www-pregspark-com-introducing-the-international-pregnancies-and-parkinsons-registry/