AGA Convenes Working Group to Develop Standard of Care for Family Planning for Women with IBD | Crohn’s & Colitis Foundation

AGA Convenes Working Group to Develop Standard of Care for Family Planning for Women with IBD



May 17, 2018

Clinical care pathway to address myths and misperceptions surrounding IBD treatment and pregnancy

Bethesda, MD — The American Gastroenterological Association (AGA) has announced the creation of the IBD Parenthood Project Working Group to spearhead the development of a clinical care pathway to drive consensus and create a standard of care among health care providers (HCPs) who treat women with inflammatory bowel disease (IBD) throughout all stages of family planning.  

“As a trusted voice in the gastroenterology community, AGA is dedicated to improving the care of women of childbearing years living with IBD and is committed to redefining industry standards to further optimize health outcomes by creating a singular vision that will be used across the spectrum of care,” said Dr. Sheila Crowe, president of the AGA Institute. “We’ve been surprised to learn that women will often stop treatment during pregnancy or while they are breastfeeding and more often than not, do not discuss this decision with their clinician. Our hope is that the clinical care pathway and accompanying evidence-based educational materials will spark and guide productive, open discussions between practitioners and women living with IBD as they plan for a family.”

Caring for women of childbearing years with IBD requires complex decisions and coordination between multiple care teams. However, there are gaps in true understanding of the risks and benefits associated with treatment of women with IBD preceding, during and after pregnancy among both HCPs and patients. Coupled with a lack of accurate and accessible information, misperceptions and fears drive many women with IBD to delay pregnancy or to be voluntarily childless. 

“At UCB we are committed to providing value to women of childbearing years living with IBD,” said Dr. Mohamed Yassine, Head of US Medical for Immunology at UCB. “The AGA IBD Parenthood Project brings us closer to delivering on this promise by arming HCPs and patients with educational tools to equip them for complex health care decisions related to IBD and pregnancy.” 

Funded by UCB, the IBD Parenthood Project Working Group was developed by AGA in partnership with the Crohn’s & Colitis Foundation, the Society for Maternal-Fetal Medicine (SMFM), and patient support network, Girls with Guts, and consists of a focused, multidisciplinary coalition of expert HCPs who are active advocates in the gastrointestinal (GI) and/or obstetrics and gynecology (OB/GYN) communities. 

Women of childbearing years with IBD are often treated by a broad spectrum of HCPs, including gastroenterologists, maternal-fetal medicine specialists and OB/GYNs, as well as others, and in many cases, are often responsible for coordinating their own care.

Upon the completion of the clinical care pathway, the IBD Parenthood Project Working Group will embark upon a robust HCP and patient outreach initiative to drive awareness of the newly available tools and resources, encouraging women to speak openly about family planning and appropriate treatment decisions.

The AGA IBD Parenthood Project is funded by a grant from UCB, a global biopharmaceutical company. 

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About the AGA Institute 

The American Gastroenterological Association is the trusted voice of the GI community. Founded in 1897, the AGA has grown to more than 16,000 members from around the globe who are involved in all aspects of the science, practice and advancement of gastroenterology. The AGA Institute administers the practice, research and educational programs of the organization. www.gastro.org. 

About UCB

At UCB, everything we do starts with a simple question: "How will this make a difference to the lives of people living with severe diseases?" We have a passionate, long-term commitment to discovering and developing innovative medicines that transform the lives of people living with severe diseases. We do that by connecting with patients and their families around the world living with the physical and social burdens of severe disease. Those connections offer new perspectives, drive innovation, and offer the hope of a new generation of therapies that are helping to transform lives.

About Society for Maternal-Fetal Medicine 

The Society for Maternal-Fetal Medicine (est. 1977) is a non-profit membership organization representing the interests of obstetricians/gynecologists who have additional formal education in maternal-fetal medicine. The Society is devoted to reducing high-risk pregnancy complications by providing continuing education to its more than 2,000 members on the latest pregnancy assessment and treatment methods. It also serves as an advocate for improving public policy and expanding research funding and opportunities for maternal-fetal medicine. SMFM hosts an annual scientific meeting in which new ideas and research in the area of maternal-fetal medicine are unveiled and discussed. For more information, visit www.smfm.org.  

About Girls With Guts

The vision of Girls With Guts is to establish a national support network that assists women in their search for community, acceptance, and empowerment. This support network helps to ensure that no woman will ever feel isolated by their disease. The Girls With Guts forum, blog and live events help strengthen the network to bring patients, doctors, and thought leaders together to advocate for IBD issues, while spreading awareness. Through sharing stories and experiences, Girls With Guts wants to give all women with IBD the strength to find their confidence, and keep it, despite having IBD or an ostomy.


Crohn's & Colitis Foundation

The Crohn's & Colitis Foundation's mission is to cure Crohn's disease and ulcerative colitis, and to improve the quality of life of children and adults affected by these diseases. The Foundation ranks third among leading health non-profits in the percentage of expense devoted to research toward a cure, with more than 80 cents of every dollar the Foundation spends going to mission-critical programs. The Foundation consistently meets the standards of organizations that monitor charities, including the Better Business Bureau's Wise Giving Alliance (give.org) and the American Institute of Philanthropy (charitywatch.org).

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