Surveillance and Research of Muscular Dystrophies and Neuromuscular Disorders | Apply Online

Opportunity Summary:

The CDC grant opportunity titled "Surveillance and Research of Muscular Dystrophies and Neuromuscular Disorders" (Funding Opportunity Number RFA-DD-14-001; CFDA 93.315) was designed to strengthen and expand the United States public health surveillance and research system for muscular dystrophies (MD) and related neuromuscular disorders by building on the established methods of the Muscular Dystrophy Surveillance Tracking and Research Network (MD STARnet). At its core, the program aimed to fund population-based surveillance and long-term follow-up that can generate practical, real-world evidence on how many people are affected, how long they live, what health services they use, what those services cost, and where inequities exist in access to care. A major emphasis is on translating surveillance into actionable findings that can guide public health practice and improve clinical care, including strategies to prevent complications and slow progression of disease-related morbidity.

A central goal of the FOA was to support rigorous, population-based estimates and analyses across several priority domains. Awardees were expected to produce updated estimates of prevalence and survival; describe patterns of healthcare service use and related costs; and examine disparities in access to care, including differences tied to proximity to specialized care, race and ethnicity, and socioeconomic status. Another key expectation was to study relationships between specific clinical treatments and specific outcomes for specific types of muscular dystrophy and neuromuscular disorders, meaning the work was not just about counting cases but also about understanding which interventions are associated with better (or worse) outcomes in real populations over time. The CDC also explicitly framed the work as supporting both public health and clinical practice, with an emphasis on preventing complications and reducing the pace or severity of disease progression where possible.

The FOA laid out five broad program intentions that together define what CDC was trying to build. First, it sought to maintain and enhance population-based surveillance systems with longitudinal follow-up and public health research capacity. Second, it aimed to expand the number of surveillance sites specifically to increase demographic, racial, and ethnic diversity in the overall surveillance network, so that findings reflect the lived experience of more communities and not only the populations historically represented in earlier systems. Third, it required meaningful data sharing with stakeholders who are working to improve health outcomes and access to care for people living with these conditions, which typically includes clinicians, public health agencies, advocacy groups, and affected communities. Fourth, it emphasized continual evaluation and improvement of the surveillance methodology and infrastructure, including documenting changes and lessons learned so that the system becomes more consistent, scalable, and useful. Fifth, it encouraged targeted pilot studies to address specific knowledge gaps in muscular dystrophy, with an expectation that results would be shared back with participants and relevant stakeholder communities.

To deliver all of this, the program was organized into four components. Components A and B were the core operational arms. Component A was aimed at existing muscular dystrophy surveillance and research programs. These awardees were expected to continue surveillance and longitudinal follow-up using MD STARnet-based methods, maintain and strengthen partnerships that enable case finding and follow-up, analyze collected data to generate findings useful for public health practice, disseminate results to stakeholders, and leverage both current and previously collected data from earlier surveillance efforts. A major responsibility under Component A was also the ongoing evaluation, modification, and documentation of the surveillance methods and infrastructure, reflecting CDC's intent to continuously refine the system based on experience.

Component B was structured for new surveillance and research programs, with the explicit intention of expanding into populations with large minority groups (the FOA references African American, Hispanic, and Asian populations as examples). The idea was to build new surveillance capacity using MD STARnet-based approaches, but in new geographic or demographic settings where the network could improve representation and equity in the evidence base. Like Component A, Component B sites were expected to form key partnerships, conduct surveillance and longitudinal follow-up, analyze data for public health value, share data with stakeholders, and take part in evaluating and documenting surveillance methodology and infrastructure improvements. In practice, this component reflects CDC's recognition that surveillance quality is not only about technical methods but also about who is included and whether the system captures the experiences of communities that may face different barriers to diagnosis and care.

Component C covered the Data Coordinating Center (DCC) functions along with abstractor training and quality assurance/quality control (QA/QC). This component exists to keep the multi-site system consistent and reliable by supporting standardized data processes, training the staff who abstract information from records, and ensuring data quality across sites. While the FOA summary does not list every DCC responsibility in detail, the inclusion of training and QA/QC signals that CDC wanted comparable, high-quality data across the network so that analyses of prevalence, outcomes, and disparities are credible and can be pooled or compared across jurisdictions.

Component D supported additional muscular dystrophy research studies designed by applicants to address specific knowledge gaps. This portion of the program was more flexible and study-driven, allowing applicants to propose focused research questions that could be answered using surveillance infrastructure or related data collection. The FOA notes an important federal compliance constraint: if a Component D study would collect data on 10 or more people, it generally triggers the need for approval under the Paperwork Reduction Act through the Office of Management and Budget (OMB), unless an exemption applies. The CDC made clear that data collection could not proceed without OMB approval when required, meaning applicants needed to plan for federal review timelines and documentation if their proposed research involved new participant-level data collection at that scale.

From an administrative standpoint, this was a discretionary grant in the health activity category, with an estimated total funding amount of $15.5 million and an anticipated 10 awards. The opportunity was posted February 26, 2014, with a letter of intent due February 7, 2014, and the full application due March 12, 2014 by 11:59 PM Eastern Time. The award ceiling and floor were both listed as 0 in the source data, which typically means the specific per-award ranges were not expressed in those fields even though total program funding and expected award count were provided.

Eligibility was broad across U.S.-based entities, spanning public and private institutions of higher education, nonprofit organizations, for-profit entities (including small businesses), and multiple levels of government (state, county, city/township, special districts, tribal governments, territories/possessions, and eligible federal agencies). The FOA also highlighted that certain types of institutions are encouraged to apply for CDC support, including Hispanic-serving institutions, historically Black colleges and universities, tribally controlled colleges and universities, and Alaska Native and Native Hawaiian serving institutions. It also allowed "bona fide agents" to apply on behalf of a state or local government if they could provide a legal binding agreement documenting that status. Foreign organizations and foreign components of U.S. organizations were not eligible.

Overall, the grant was built to do more than fund isolated studies. Its structure shows a systems-building approach: maintain and expand a coordinated surveillance network, improve methodological consistency through a coordinating center and QA/QC, broaden representation by adding sites serving more diverse populations, and generate applied research outputs that can directly inform public health decisions, clinical practice, and stakeholder action around muscular dystrophies and neuromuscular disorders. For technical assistance with accessing the full announcement at the time, CDC directed inquiries to the Procurement and Grants Office Technical Information Management Section (TIMS) at 770-488-2700 or pgotim@cdc.gov.

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