Surveillance and Research of Muscular Dystrophies and Neuromuscular Disorders

 

• Purpose. Using methods based on those from the Muscular Dystrophy Surveillance Tracking and Research Network (MD STARnet), this funding opportunity announcement (FOA) will support: 1. Conducting population-based surveillance, longitudinal follow-up, and public health research for muscular dystrophies and neuromuscular disorder(s): 1) to develop estimates for prevalence, survival, healthcare service use and costs, disparities in access to care (by proximity to source of care, race/ethnicity, and SES), and 2) to determine associations between specific clinical treatments and specific outcomes for specific types of MD and neuromuscular disorders, and 3) to support public health and clinical practice for prevention of morbidities and their progression among persons with muscular dystrophy and neuromuscular disorders 2. Expanding the number of surveillance site(s) to increase the demographic, racial, and ethnic diversity in the current MD surveillance system 3. Sharing data with stakeholders seeking to improve health and access to care of people living with these conditions 4. Evaluating, modifying, and documenting the methodology and infrastructure of the surveillance system 5. Conducting pilot studies that investigate specific MD knowledge gaps and sharing results with participants and stakeholders This FOA has four components to achieve the purpose of the program. Components A and B consist of the core activities. Component A - core (existing MD surveillance and research programs) consists of using methods based on those from MD STARnet and lessons learned from previous MD surveillance systems to conduct surveillance and longitudinal follow-up for muscular dystrophies and neuromuscular disorder(s); maintaining current and building new key partnerships; analyzing data to produce findings useful for public health practice; disseminating results to stakeholders using data collected from current and previous MD surveillance programs; and evaluating, modifying, and documenting the surveillance methods and infrastructure. Component B - core (new MD surveillance and research programs) consists of building a system using methods based on those from MD STARnet to conduct surveillance and longitudinal follow-up for muscular dystrophies and neuromuscular disorder(s) in a population with a large minority group (i.e. African Americans, Hispanics, Asians); building new key partnerships; analyzing data to produce findings useful for public health practice; disseminating data to stakeholders; and evaluating, modifying, and documenting the surveillance methods and infrastructure. Component C consists of the data coordinating center (DCC) and abstractor training and quality assurance/control that support the core activities. Component D consists of additional muscular dystrophy research studies in which applicants design a study to address a knowledge gap in MD and share data with study participants and MD stakeholders. (Note: The methodology for component D studies will not be known until applications have been submitted. Studies that collect data on 10 or more people are required to have OMB approval unless one of several exemptions apply. Data will not be collected without the Office of Management and Budget’s (OMB) approval.)

Deleted 04/11/2014 (Archived.) RFA-DD-14-001 Agency: Department of Health and Human Services
Office: CENTERS FOR DISEASE CONTROL Grant 10 Section III. Eligibility Information 1. Eligible Applicants Eligible Organizations Higher Education Institutions: • Public/State Controlled Institutions of Higher Education • 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: • Hispanic-serving Institutions • Historically Black Colleges and Universities (HBCUs) • Tribally Controlled Colleges and Universities (TCCUs) • Alaska Native and Native Hawaiian Serving Institutions Nonprofits Other Than Institutions of Higher Education • Nonprofits (Other than Institutions of Higher Education) For- Profit Organizations • Small Businesses • For-Profit Organizations (Other than Small Businesses) Governments • State Governments • County Governments • City or Township Governments • Special District Governments • Indian/Native American Tribal Governments (Federally Recognized) • Indian/Native American Tribal Governments (Other than Federally Recognized) • Eligible Agencies of the Federal Government • U.S. Territory or Possession Other • Independent School Districts • Public Housing Authorities/Indian Housing Authorities • Native American tribal organizations (other than Federally recognized tribal governments) • Faith-based or Community-based Organizations • Regional Organizations • 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 "Other Attachment Forms" when submitting via www.grants.gov. • Federally Funded Research and Development Centers (FFRDCs): FFRDCs are operated, managed, and/or administered by a university or consortium of universities, other not-for-profit or nonprofit organization, or an industrial firm, as an autonomous organization or as an identifiable separate operating unit of a parent organization. A FFRDC meets some special long-term research or development need which cannot be met as effectively by an agency’s existing in-house or contractor resources. FFRDC's enable agencies to use private sector resources to accomplish tasks that are integral to the mission and operation of the sponsoring a Key Dates Letter of Intent Due Date: February 7, 2014, Application Due Date: March 12, 2014, by 11:59 PM U.S. Eastern Time. 03/12/2014 This program does not have cost sharing or matching requirements. CDC Procurement and Grants Office
(PGO) Technical Information Management Section (TIMS)
Phone: 770-488-2700
E-mail: pgotim@cdc.gov
pgotim@cdc.gov $15,500,000.00