Date of Award

Spring 5-11-2018

Degree Type


Degree Name

Master of Public Health (MPH)


Public Health

First Advisor

Dr. Richard Rothenberg

Second Advisor

Natalie Street

Third Advisor

K. Tiffany Smith


Introduction: Because of the variability in muscular dystrophy (MD) in terms of clinical manifestations, affected demographic, and health trajectories, it is important to study the distribution of characteristics by MD type; however, few U.S. population-based studies have examined the distributions of sociodemographic, socioeconomic, and clinical factors across MD types. MD STARnet is the only U.S. population-based surveillance system for MD. To assess the feasibility of expanding the original surveillance methodology to other forms of MD, MDS conducted a pilot study, which was carried out in four sites (Arizona, Colorado, Iowa, and 12 counties in Western New York).

Aims: We aim to describe the demographic, sociodemographic, and clinical characteristics of individuals within the MD STARnet pilot cohort by MD type.

Methods: Potential MD cases were identified through searches of clinical and administrative data sources using ICD-9-CM codes, ICD-10 codes, and prior MDS surveillance data. Data sources included medical records from inpatient and outpatient healthcare facilities, vital records, and hospital discharge data. Medical record abstraction of eligible cases was performed by trained abstractors. A total of 2,862 eligible MD cases who resided in an MDS site during the study period and had a health encounter were included in the pilot study.

Results: The MD STARnet pilot cohort were primarily male, white and non-Hispanic. Approximately half of DBMD and DM cases had public insurance, 30-35% had private insurance and 8-15% had both public and private. Most MD cases were not in congregate care or assisted living. 27.9% of CMD patients and 22.8% of DM patients were on NIPPV. EDMD, DM and LGMD patients had the most frequent use of pacemakers; heart transplants were most frequently documented in DD, EDMD and LGMD patients. The most common medications listed in the health records of MD patients were Lisinopril, Furosemide, Albuterol, Omeprazole, and Prednisone.

Available for download on Thursday, December 31, 2020