Surveillance of Muscular Dystrophies | CDC RFA DD 24 0064

Opportunity Information: Apply for CDC RFA DD 24 0064

This CDC funding opportunity (RFA DD 24 0064), run through the National Center on Birth Defects and Developmental Disabilities (NCBDDD), supports long-term, population-based surveillance of several muscular dystrophies to better understand health outcomes and inequities and to spot practical ways to improve care. The surveillance focus includes Duchenne muscular dystrophy (DMD), Becker muscular dystrophy (BMD), myotonic dystrophy (DM), facioscapulohumeral muscular dystrophy (FSHD), limb-girdle muscular dystrophy (LGMD), congenital muscular dystrophy (CMD), Emery-Dreifuss muscular dystrophy (EDMD), and distal muscular dystrophy. The central idea is to build an accurate cohort of people living with these conditions in a defined geography, then follow them over time so the data can describe what is happening across the full population, not just within a single clinic or health system.

Applicants can propose surveillance for an entire state or for a region within a state, but they are expected to rely on multiple data sources to make the cohort as complete and unbiased as possible. Case-finding and longitudinal follow-up are intended to come from a mix of neuromuscular and specialty outpatient clinics and other clinical settings, combined with administrative and public data sources such as vital records, Medicaid and Medicare data, hospital discharge datasets, and other locally available systems. This multi-source approach is meant to improve completeness, capture outcomes over time (including mortality), and better reflect real-world access to care, treatment uptake, and differences across subpopulations.

The project is structured in three components. Component A is the core program and is where most awards and funding sit; it covers the main surveillance work plus dissemination of findings. Component B is a single enhanced award focused on strengthening how medical record abstraction is done through standardized training and ongoing quality improvement. Component C is optional and dependent on available funds, with two potential awards aimed at more advanced or exploratory methods that could improve case-finding or data collection, or help interpret coding practices used to identify muscular dystrophy in data systems.

Component A has five main objectives that outline the expected outputs of the surveillance system. First, recipients are expected to estimate prevalence for the selected muscular dystrophies and report mortality and survival patterns. Second, they should describe disease progression and major co-morbidities, which can help clarify the clinical course and associated health burdens over time. Third, the program seeks to characterize healthcare utilization before and after the publication of standards of care, which can provide evidence about whether recommended practices are changing real-world care patterns. Fourth, Component A emphasizes access to care, uptake of new treatments, and health equity, meaning recipients should be able to highlight differences by demographic, geographic, socioeconomic, or other relevant factors that may point to avoidable disparities. Fifth, the surveillance should examine risk factors and protective factors that may influence outcomes, which can inform prevention, earlier intervention, or supportive services.

Component B is designed to improve consistency and reliability in how data are pulled from medical records. Its objectives are to train abstractors in standardized medical record data collection and to provide ongoing training rather than one-time onboarding. In addition, Component B requires the creation and implementation of a plan to periodically assess the quality of abstracted data, which typically means routine checks for completeness, consistency, and accuracy across abstractors and sites. This component exists because differences in abstraction practices can significantly affect surveillance validity, especially across multiple clinics and jurisdictions.

Component C supports either of two enhanced aims. One option is to develop and evaluate new approaches to finding cases or collecting longitudinal data, including methods like machine learning algorithms, natural language processing, or automated extraction and integration of data from electronic systems. The other option is to study how muscular dystrophy-specific ICD-10-CM codes are being used by different data sources, which can help clarify how reliable administrative coding is for identifying cases and tracking outcomes. Because Component C is optional and funding-dependent, applicants would typically treat it as an add-on that strengthens innovation or interpretability of the broader surveillance effort.

Funding is organized across the components over a four-year project period. Component A has an estimated total of 14,000,000 across four years and is expected to make 5 to 7 awards. Component B has an estimated total of 400,000 across four years and is expected to make 1 award. Component C has an estimated total of 800,000 across four years and is expected to make 2 awards, subject to available funds. The notice lists an award ceiling of 700,000 and anticipates around 10 total awards across the opportunity. The funding instrument is a cooperative agreement, which generally means CDC expects substantial involvement (for example, coordination on methods, data standards, or shared deliverables) rather than a hands-off grant.

Eligibility is broad and includes state, county, and local governments; public and private institutions of higher education; nonprofit organizations with and without 501(c)(3) status; for-profit organizations (including small businesses); and federally recognized tribes and other tribal organizations, among others. Applications were due May 8, 2024. A key rule for the add-on components is that applicants for Component B or Component C must also apply for Component A and must provide evidence of that submission (for example, the face page from the Component A application). This ties the enhanced work directly to the core surveillance infrastructure so the training, quality improvements, or innovative methods feed into a functioning population-based system.

• The Centers for Disease Control - NCBDDD in the health sector is offering a public funding opportunity titled "Surveillance of Muscular Dystrophies" and is now available to receive applicants.
• Interested and eligible applicants and submit their applications by referencing the CFDA number(s): 93.073.
• This funding opportunity was created on 2024-03-01.
• Applicants must submit their applications by 2024-05-08. (Agency may still review applications by suitable applicants for the remaining/unused allocated funding in 2026.)
• Each selected applicant is eligible to receive up to $700,000.00 in funding.
• The number of recipients for this funding is limited to 10 candidate(s).
• Eligible applicants include: State governments, County governments, City or township governments, Special district governments, Independent school districts, Public and State controlled institutions of higher education, Native American tribal governments (Federally recognized), Public housing authorities/Indian housing authorities, Native American tribal organizations (other than Federally recognized tribal governments), Nonprofits having a 501 (c) (3) status with the IRS, other than institutions of higher education, Nonprofits that do not have a 501 (c) (3) status with the IRS, other than institutions of higher education, Private institutions of higher education, For-profit organizations other than small businesses, Small businesses, Others, Unrestricted.

Apply for CDC RFA DD 24 0064

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