Surveillance of Muscular Dystrophies

Funding Agency:
Centers for Disease Control and Prevention

The purpose of this NOFO is to conduct longitudinal, population-based surveillance of select muscular dystrophies (MD) [Duchenne MD (DMD), Becker MD (BMD), myotonic dystrophy (DM), facioscapulohumeral muscular dystrophy (FSHD), limb-girdle MD (LGMD), congenital MD (CMD), Emery-Dreifuss MD (EDMD), and distal MD] to describe key health outcomes and health inequities, with the goal of improving the health of individuals living with muscular dystrophies. This NOFO has three components to achieve the purpose of the program: Component A is the core surveillance component and will fund longitudinal data collection, analysis, and dissemination of results. Component B will fund one applicant to conduct abstractor training and activities that improve quality of the surveillance data. Component C is an optional component in which recipients will either 1) develop and evaluate novel approaches to case finding or longitudinal data collection (e.g., through machine learning algorithms, automated data extraction) or 2) describe the use of MD-specific ICD-10-CM codes by source. The goals of Components B and C are to improve accuracy and efficiency in case finding and data collection to improve data quality and timeliness. Surveillance data will be analyzed and results disseminated to determine prevalence, mortality/survival, care utilization, differences in access to care and new treatments, disease progression, comorbidities, and factors that lead to better outcomes.

Deadline: May 8, 2024

Agency Website

Eligibility Requirements

The applicant must provide evidence of access to previously collected muscular dystrophy surveillance data from the applicant’s geographic region (describe previous experience and submit table on numbers of individuals with MD). 

Funding Type





Medical - Clinical Science
Medical - Translational

External Deadline

May 8, 2024