NATIONAL INSTITUTES OF HEALTH PROVISIONS
Over a three year period, the bill would raise the authorization level for inflammatory bowel disease research at the National Institute of Diabetes and Digestive and Kidney Diseases at the NIH to $100 million. These funds would be focused on –
(a) Genetic research on susceptibility for inflammatory bowel disease, including the interaction of genetic and environmental factors in the development of the disease.
(b) Research targeted to increase knowledge about the causes and complications of inflammatory bowel disease in children.
(c) Clinical inflammatory bowel disease research, including clinical studies and treatment trials.
(d) Expansion of the Institute's Inflammatory Bowel Disease Centers program with a focus on pediatric research.
(e) Other research initiatives identified by the scientific document entitled `Challenges in Inflammatory Bowel Disease' and the Research Agenda for Pediatric Gastroenterology, Hepatology and Nutrition entitled "Chronic Inflammatory Bowel Disease."
The legislation reserves up to 20% of authorized funds for the training of the next generation of IBD investigators, including pediatric research specialists.
CENTERS FOR DISEASE CONTROL AND PREVENTION PROVISIONS
The bill would establish a "Pediatric Inflammatory Bowel Disease Registry" through the Centers for Disease Control and Prevention. This landmark registry would be used to collect and analyze data concerning;
a) The incidence and prevalence of pediatric IBD in the United States.
b) The genetic and environmental factors that may be associated with pediatric IBD;
c) The age, race or ethnicity, gender, and family history of children who are diagnosed with IBD;
d) Treatment approaches and outcomes for pediatric patients.
The registry would also serve as a mechanism to put patients in contact with researchers conducting clinical trials on pediatric IBD.
Finally, H.R. 1113 would require CDC to develop a "National Inflammatory Bowel Disease Action Plan." This plan would establish strategies for;
a) Increasing awareness of IBD among the general public and health care providers to facilitate more timely and accurate diagnoses.
b) Preventing the progression of the disease and related complications, including colorectal cancer.
See the Action Alerts page to find out what you can do to support the passage of the IBD Research Bill.
In his 1863 Gettysburg Address, President Abraham Lincoln eloquently described our young country's government as being "of the people, by the people, for the people." True as this remains, many Americans forget that their voice can contribute to crucial changes in how they live their lives. At CCFA, we've been able to successfully mobilize the IBD community and enlist the support of key legislators to provide for a better today, and a more promising tomorrow, for Crohn's and colitis patients everywhere.
