Parkinson’s disease also affects young women

Welcome to PregSpark, the International Registry for Pregnancy and Parkinson’s disease. Are you a pregnant woman living with Parkinson’s disease?

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We are PregSpark, THE online registry designed for pregnant women live with young onset Parkinson’s disease (YOPD). Pregnancy in Parkinson’s disease is rare, but with Parkinson’s disease being the fastest growing brain disease worldwide and increasing maternal age, this combination is rapidly becoming more common.

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Research gap

The number of people with Parkinson’s disease is growing rapidly. Contrary to the common perception, the disease also affects young people, including young women of childbearing age. Far many young women with Parkinson’s disease, the wish to have children comes with many uncertainties. The impact of pregnancy on Parkinson’s disease, or vice versa, is not yet understood. Current Parkinson’s disease guidelines do not contain any advice on treatment and support of women with Parkinson’s disease and their children throughout and after pregnancy.

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Closing the gap

The PregSpark registry was developed to close the research gap regarding pregnancy in women with Parkinson’s disease. This registry follows pregnant women with Parkinson’s disease throughout their pregnancy and up to two years after delivery. With the data collected through this study, we will develop guidelines to inform women with Parkinson’s disease with a wish to have children, and treat and support pregnant women with Parkinson’s disease.

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Women with Parkinson’s disease: unite!

Are you or do you know a woman with Parkinson’s disease? Become engaged in research studies en help to increase knowledge regarding sex- and gender differences, as well as women-specific issues. PregSpark focusses specifically on pregnant women with Parkinson’s disease. Does this apply to you, or do you know pregnant women with Parkinson’s disease? Please, sign up or share our website. Let’s care for pregnant women with Parkinson’s disease and SPARK for all women with Parkinson’s disease.

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What do we want to achieve

Due to a lack of available literature no evidence based periconceptional advice or management protocol is available regarding the safety of pregnancy and lactation in YOPD women. This makes deciding on whether or not to pursue pregnancy after diagnosis an uncertain and even anxious process. The data in our registration system will contribute to the creation of new guidelines and help to answer important questions. We aim to include as many pregnant YOPD women as possible.

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What do we need for our goal

To achieve our goal, women all around the world can enroll online and provide their own data via questionnaires. The PregSpark online registration system will be available in multiple languages and data collection will be ongoing from the time it goes live in July 2023.

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Meet our team

It was the lack of information the principal researcher on this project, Annelien, was able to find herself before her pregnancy in 2021 that has led her to the idea of PregSpark. It is the combination of her background in gynecology together with her own personal experience as a patient that made her realize she was called to do this research and be an advocate for young women with PD. The PregSpark team consists of both health care providers from the departments of neurology and gynecology of the Radboud University Medical Center, Nijmegen, the Netherlands, in collaboration with a team of voluntary female patient researchers.