OpportunityTitle: A Pilot Surveillance System for High Impact/Low Prevalence Congenital and Inherited Conditions
AdditionalInformationOnEligibility: Eligible Applicants    Eligible Organizations  Higher Education Institutions:  &#149; Public/State Controlled Institutions of Higher Education   &#149; Private Institutions of Higher Education     The following types of Higher Education Institutions are always encouraged to apply for CDC support as Public or Private Institutions of Higher Education:   &#149; Hispanic-serving Institutions  &#149; Historically Black Colleges and Universities (HBCUs)  &#149; Tribally Controlled Colleges and Universities (TCCUs)   &#149; Alaska Native and Native Hawaiian Serving Institutions    Nonprofits Other Than Institutions of Higher Education  &#149; Nonprofits (Other than Institutions of Higher Education)     For- Profit Organizations  &#149; Small Businesses  &#149; For-Profit Organizations (Other than Small Businesses)    Governments  &#149; State Governments   &#149; County Governments  &#149; City or Township Governments  &#149; Special District Governments  &#149; Indian/Native American Tribal Governments (Federally Recognized)   &#149; Indian/Native American Tribal Governments (Other than Federally Recognized)  &#149; Eligible Agencies of the Federal Government  &#149; U.S. Territory or Possession    Other  &#149; Independent School Districts  &#149; Public Housing Authorities/Indian Housing Authorities  &#149; Native American tribal organizations (other than Federally recognized tribal governments)  &#149; Faith-based or Community-based Organizations  &#149; Regional Organizations  &#149; Bona Fide Agents    A Bona Fide Agent is an agency/organization identified by the state as eligible to submit an application under the state eligibility in lieu of a state application. If applying as a bona fide agent of a state or local government, a legal, binding agreement from the state or local government as documentation of the status is required. Attach with &quot;Other Attachment Forms&quot; when submitting via www.grants.gov.    Non-domestic (non-U.S.) Entities (Foreign Organizations) are not eligible to apply. Foreign (non-U.S.) components of U.S. Organizations are not eligible.
Description: The purpose of this research is to design and test the feasibility of a surveillance system for congenital and inherited conditions that have low prevalence but high health and economic impact in the U.S. population that will support description of this population across the lifespan. Initial design of this surveillance system will focus on three conditions which exemplify different types of disorders: e.g. spina bifida is an example of a neurological condition affecting mobility; muscular dystrophy is an example of a neuromuscular condition; and fragile X syndrome is an example of a condition affecting cognition and behavior. The project will develop a prototype surveillance system that, if found effective, can serve as a model for other low prevalence/high impact conditions. There is currently no system or integrated approach to identify and describe persons affected by these conditions, thus limiting opportunities to understand, intervene, and improve health services and public health outcomes for those people affected with these conditions and their families. A system focused on low prevalence/high impact conditions may assist public health practitioners, clinicians, and other groups to: describe the epidemiology and the features of secondary health conditions associated with these disorders; monitor the progress of public health interventions, develop screening strategies for the detection of new cases, inform policies aimed at improving the healthcare delivered to these patients, and address potential differences or disparities in the impact of these conditions on the population. In short, this research effort will explore how different systems and data sources may be used to improve health services and health outcomes among people affected with selected conditions and their relatives.
GrantorContactEmailDescription: PGOTIM@cdc.gov
GrantorContactText: Centers for Disease Control and Prevention &lt;br/&gt;Procurement and Grants Office &lt;br/&gt;TIMS &lt;br/&gt;Phone 770-488-2700
CloseDateExplanation: Letter of Intent Due Date:  February 2, 2012    Application Due Date:  March 2, 2012