The Muscular Dystrophy Surveillance, Tracking, and Research Network (MD STARnet)

archived

The purpose of this NOFO is to better understand the public health and clinical impacts of living with MD by conducting longitudinal, population-based surveillance and research of eligible MDs (DMD, BMD, DM, FSHD, LGMD, CMD, EDMD, OPMD, and Distal MD). The current cycle will focus on identifying eligible MD cases, conducting longitudinal follow-up and research, analyzing data, and publishing and disseminating the results. Current MD STARnet sites will collect data to estimate prevalence and survival and additional clinical data on existing MD cohorts. New MD STARnet sites will focus on identifying eligible MD cases and collecting data to estimate prevalence, survival and track key clinical indicators. Identification of cases through population-based surveillance will enable existing and new sites to conduct research on these populations. This information is expected to advance understanding of diagnosed prevalence, disease progression and survival; clinical care and interventions and their alignment with recommended care; disparities in access to care; the association of treatment with outcomes, and the impact of MD on the lives of affected individuals and their families.

High