Parkinson’s disease also affects young women

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

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We are PregSpark, THE online registry designed for women around the world who live with Young Onset Parkinson’s disease (YOPD) and who are pregnant.

Pregnancy in Parkinson’s is rare, but with Parkinson’s disease being the fastest growing brain disease worldwide together with increasing maternal age, this combination will be more common in the future.

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Information

The number of people with Parkinson’s disease is growing rapidly worldwide. Contrary to the common perception the disease also affects young people, including young women. Women at childbearing age with the wish to have children, become mothers. However, the impact of pregnancy on YOPD or the impact of YOPD on pregnancy, both mother and child, is not yet understood.

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Close the Research Gap

To this day women have been neglected in Parkinson’s research and data on the combination of Parkinson’s disease and Pregnancy is limited. This knowledge gap needs to be closed in order to provide women with the essential information to be able to make an informed choice regarding their desire to have children.

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PD women unite

PD Women unite, become engaged in research studies and help to increase knowledge regarding gender differences and women-specific issues. Pregspark.com focusses on pregnancies in YOPD women. Does this situation apply to you or do you know women who are pregnant with YOPD, please refer them to our website. Let’s care for Pregnant women with Parkinson’s and SPARK for all female YOPD patients.

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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.