Navigating Pregnancy with Chronic Disease: Closing the Data Gap
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"The biggest concern that I had about deciding whether to have children or not was how likely was it that I was going to pass on Lupus to my kids, and the effect of my medications," says Kate, living with lupus.
Kate's concerns reflect the complexities that many women with lupus face when considering motherhood. Like many chronic diseases, lupus primarily affects women during their reproductive years - yet for decades, women like Kate have been excluded from clinical research due to perceived risks. The result? A lack of clear, evidence-based guidance, treatment uncertainty, and missed opportunities to support women during pregnancy and breastfeeding.
Closing Gaps Through Global Collaboration
"It is ethically wrong not to recruit pregnant women into research studies," says Professor Catherine Nelson Piercy, leader in obstetric medicine.
The clinical research community is increasingly recognizing this long-standing data gap. Academics, clinicians, regulators and patient advocates are calling for change – one example is the BRIDGE consortium (Better Research, Information and Data Generation for Empowerment), an independent, multidisciplinary group of experts committed to a paradigm shift through the advancement of practical and action-oriented solutions to overcome information gaps that affect women with chronic conditions throughout their reproductive journey.
In this video, you will hear how UCB, a global biopharmaceutical company, is dedicated to amplifying the voices of women of childbearing age living with chronic diseases to bring them to the forefront of vital healthcare conversations, ensuring their needs are not only acknowledged, but prioritized. The company is supporting this shift by designing clinical trials to better reflect women's real-life experiences. One example is creating clinical trial protocols that allow participants who become pregnant during the study to stay enrolled; an important step that values both data integrity and autonomy.
The overall goal is clear: every woman living with a chronic disease should be empowered to make informed decisions about her health and no woman should ever have to choose between managing her disease and having a family.
Protecting Women Through Research, Not From Research
This is just the beginning. The community's collective ambition to provide accurate, evidence-based care is paving the way for clearer options for women living with chronic disease. It marks a meaningful shift from fear to trust, from exclusion to inclusion. This evolving approach ensures that the future of chronic disease care reflects the lived realities of women - a future where closing the gender data gap means protecting women through research, not from research.
Watch the video* to hear firsthand how living with a chronic disease shapes family planning decisions and how inclusive research can create new possibilities for women everywhere.
* This documentary is part of a disease awareness campaign that is fully funded by UCB, a global biopharmaceutical company. It is not intended to provide medical advice. Please consult your healthcare provider for any questions relating to your condition or treatment. Funding by UCB was provided through a financial agreement with Acumen. Prof. Catherine Nelson-Piercy and Mrs. Kate, CEO of the Wren Project, have both received consulting fees for their involvement in this documentary. UCB has reviewed and approved the video from a regulatory perspective.