CDC is looking for proposals to design and test a surveillance system to incorporate data for congenital and inherited conditions that have low prevalence but have a high health and economic impact in the U.S. population. CDC wants to see this surveillance system in place so that agencies and organizations will be able to inform, evaluate policies, and intervene to improve health services and health outcomes.
At the present time, approximately 7,000 people have low prevalence/high impact conditions in the U.S population collectively affecting about 25 million people. In the U.S., a condition is considered low prevalence/high impact when the number of cases at any given time does not reach 200,000. In comparison, the number of cases for a common disease such as diabetes amounted to nearly 26 million for the U.S. in 2010.
Healthcare for individuals with low prevalence/high impact conditions can be costly and labor intensive. For example, the 2006 average annual medical expenditure for people with actively managed cystic fibrosis ages below 65 years was about $48,000 which is 22 times as much as the average medical expenditure of a person without the disease. The cost of treatment for some low prevalence/high impact diseases can be as high as $400,000 per year.
To address the problem, CDC released a FOA on January 4, 2012 titled “A Pilot Surveillance System for High Impact/Low Prevalence Congenital and Inherited Conditions” (RFA-DD-12-002) looking for applicants to design a surveillance system to focus on spina bifida a neurological condition affecting mobility, muscular dystrophy a neuromuscular condition, and fragile X syndrome a condition affecting cognition and behavior. The project will develop a prototype surveillance system that in the future may be able to serve as a model for other low prevalence/high impact conditions.
Research objectives are to identify gaps and deficiencies in existing local, regional, and national data sources and existing surveillance systems for the three target conditions, develop and execute a plan to integrate all major data sources into a functional surveillance system for the three target conditions simultaneously, and then pilot test the surveillance system.
Eligible applicants can include higher education institutions, nonprofits, for-profits, small businesses, and state and local governments. Estimated total program funding for the Cooperative Agreement is $800,000 with one expected award. The award ceiling is $400,000.
The Letter of Intent is due February 2, 2012 with applications due March 2, 2012. For further information, go to www.grants.gov or phone the contact center at 800-518-4726 or email firstname.lastname@example.org.