About Pediatric Functional Gastrointestinal and Motility Disorders

FGIMDs affect individuals of all ages, including children, and these conditions can range in severity from discomforting to life-changing or life-threatening. Most FGIMDs, even those that emerge during childhood, are chronic and require a lifetime of care to manage painful and disabling symptoms. Despite the severity of FGIMDs and the high healthcare costs associated with addressing these conditions, little is understood scientifically and treatment options are extremely limited. This lack of understanding and available treatment options is particularly serious for pediatric FGIMDs, where, as with other pediatric conditions, it is especially difficult to conduct research activities for a number of reasons. In an effort to improve the lives of individuals affected by FGIMDs we currently support the Digestive Health Alliance Children’s GI Research Network; the only multi-center research consortium dedicated to ending the suffering caused by FGIMDs during childhood. This Network currently conducts collaborative research projects focused on improving diagnosis and treatment of pediatric FGIMDs.

Members of Congress Can Help

Congressional support is needed for the bipartisan Pediatric Consortia Establishment Act, and work to see that this important legislation is passed into law during this Congress. This legislation was nearly enacted in the last Congress, and it seeks to bolster research into pediatric conditions and overcome some of the obstacles of pediatric research by establishing multi-institution research consortia focused on certain conditions. As the nation’s leading research consortium focused on pediatric FGIMDs, the Digestive Health Alliance Children’s GI Research Network would compete well for the federal support made available if this legislation is passed. Specifically, H.R. 1080 would:

• Authorize the National Institutes of Health to establish up to 20 pediatric research consortia in different areas.
• Provide federal support of up to $2.5 million per year to these consortia to ensure that they can effectively conduct multi-institute research projects and studies.

House Representatives — Become a cosponsor of the House version of the Pediatric Research Consortia Establishment Act, which has bill number H.R. 1080.
Senators — Re-introduce the Senate version of the Pediatric Research Consortia Establishment Act, which was championed by Senator Sherrod Brown (D-OH) and Senator Jeff Sessions (R-AL) in the 111th Congress.