Opportunity Information: Apply for RFA DD 19 002
The Muscular Dystrophy Surveillance, Tracking, and Research Network (MD STARnet) grant opportunity (Funding Opportunity Number RFA DD 19 002) is a CDC cooperative agreement designed to strengthen what is known, at a population level and over time, about the real-world public health and clinical impacts of muscular dystrophy (MD). The core idea is to build and maintain a longitudinal, population-based surveillance and research system that can reliably identify people diagnosed with selected muscular dystrophies, follow them over time, and use those data to answer practical questions about how these conditions affect health outcomes, healthcare use, and daily life. The eligible MD conditions under this program include 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), oculopharyngeal muscular dystrophy (OPMD), and distal muscular dystrophy.
This funding cycle emphasizes several connected activities: finding and confirming eligible MD cases through population-based surveillance methods, conducting longitudinal follow-up, carrying out research using these cohorts, analyzing the resulting data, and publishing and broadly sharing findings. In practice, this means awardees are expected to build the kind of case-finding and data systems that can support dependable estimates of diagnosed prevalence and survival, while also supporting deeper clinical tracking that can illuminate disease progression and key health indicators across time. A major intended value of MD STARnet is that it creates comparable data across sites, making it possible to see patterns that would be hard to detect in smaller clinic-based samples or short-term studies.
The announcement distinguishes between responsibilities for current versus new MD STARnet sites. Existing sites are expected to continue and expand work with established cohorts, including collecting data that support updated prevalence and survival estimates and adding richer clinical detail to understand trajectories, care patterns, and outcomes within those already-identified populations. New sites are expected to focus heavily on establishing the foundational surveillance capacity: identifying eligible cases in their populations, collecting the data needed to estimate prevalence and survival, and tracking key clinical indicators that can be used for longitudinal analyses. In both cases, the population-based identification of cases is the gateway that enables subsequent research, because it helps ensure the cohorts reflect the underlying community rather than only those seen at select specialty centers.
The public health and research aims described in the opportunity are broad but consistent: improving understanding of how many people are diagnosed with these MDs, how disease progresses, and how survival varies across groups and settings. The program is also explicitly oriented toward evaluating clinical care and interventions in the real world, including how closely care aligns with recommended standards and how differences in access to care may contribute to disparities in outcomes. Another stated focus is examining associations between treatments and outcomes, which can help clarify what is working in routine practice and where gaps remain. Beyond medical endpoints, the opportunity highlights interest in the impact of MD on individuals and families, signaling that quality of life, caregiver burden, and broader social impacts are within scope when supported by the surveillance and follow-up framework.
Administratively, this is a discretionary federal funding opportunity under the Department of Health and Human Services, Centers for Disease Control and Prevention (CDC), issued through ERA. The award mechanism is a cooperative agreement, which generally indicates CDC will have substantial involvement beyond simply providing funds, often through collaboration on technical approach, data standards, and network coordination. The CFDA number listed is 93.315, the award ceiling is $375,000, and the opportunity anticipated up to 15 awards. The posting indicates a creation date of December 7, 2018, with an original application closing date of February 13, 2019, and electronic applications due by 5:00 p.m. Eastern Time on the deadline date.
Eligibility is broad and includes many types of public and private entities. Eligible applicants include state, county, and city or township governments; special district governments; independent school districts; public and state-controlled institutions of higher education; private institutions of higher education; federally recognized Native American tribal governments and other tribal organizations; public housing authorities/Indian housing authorities; nonprofit organizations with or without 501(c)(3) status (excluding institutions of higher education in those categories as specified); for-profit organizations other than small businesses; small businesses; and other entities as allowed by the additional eligibility language in the full notice. Overall, the opportunity is structured to support a multi-site network capable of producing population-based, longitudinal evidence that can guide clinical practice, inform public health planning, and highlight unmet needs and inequities affecting people living with muscular dystrophy and their families.Apply for RFA DD 19 002
- The Department of Health and Human Services, Centers for Disease Control and Prevention - ERA in the health sector is offering a public funding opportunity titled "The Muscular Dystrophy Surveillance, Tracking, and Research Network (MD STARnet)" and is now available to receive applicants.
- Interested and eligible applicants and submit their applications by referencing the CFDA number(s): 93.315.
- This funding opportunity was created on Dec 07, 2018.
- Applicants must submit their applications by Feb 13, 2019 Electronically submitted applications must be submitted no later than 500 p.m., ET, on the listed application due date.. (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 $375,000.00 in funding.
- The number of recipients for this funding is limited to 15 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 (see text field entitled Additional Information on Eligibility for clarification), Unrestricted (i.e., open to any type of entity above), subject to any clarification in text field entitled Additional Information on Eligibility.
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