A Review of MD STAR<i>net</i>’s Research Contributions to Pediatric-Onset Dystrophinopathy in the United States; 2002-2017

Sahay, Kashika; Smith, Tiffany; Conway, Kristin M; Romitti, Paul A.; Lamb, Molly M.; Andrews, Jennifer; Pandya, Shree; Oleszek, Joyce; Cunniff, Christopher; Valdéz, Rodolfo

doi:10.1177/0883073818801704

Cited by 8 publications

(5 citation statements)

References 30 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…MD STARnet is a multisite population-based surveillance system funded by the Centers for Disease Control and Prevention that identifies and follows individuals diagnosed with DBMD. The surveillance methodology has been described previously [18][19][20][21][22] The MD STARnet case identification and data abstraction approach have been described in detail previously [18,19,23]. In short, cases were screened for cohort eligibility (resident of MD STARnet site, eligible cohort birth date, and diagnosis prior to cohort end date) using International Classification of Diseases, Ninth Revision ICD-9 (ICD-9-CM), code 359.1 and International Classification of Diseases, Tenth Revision (ICD-10), code G71.0, from neuromuscular clinics, private practices, and hospitals.…”

Section: Study Population and Data Sourcesmentioning

confidence: 99%

Racial and Ethnic Differences in Timing of Diagnosis and Clinical Services Received in Duchenne Muscular Dystrophy

et al. 2023

View full text Add to dashboard Cite

Introduction: Racial/ethnic differences in diagnostic and treatment services have been identified for a range of health conditions and outcomes. The current study aimed to analyze whether there are racial/ethnic differences in the timing of diagnostic testing and treatments for males with Duchenne Muscular Dystrophy (DMD). Methods: Diagnostic and clinical data for male individuals with DMD born during 1990-2010 were analyzed from eight sites (Arizona, Colorado, Georgia, Iowa, Piedmont Region of North Carolina, western New York, South Carolina, Utah) of the Muscular Dystrophy Surveillance Tracking and Research Network (MD STARnet). Seven milestones related to diagnosis/treatment experiences were selected as outcomes. Times to each milestone were estimated and compared by four racial/ethnic groups using Kaplan-Meier estimation and Cox proportional hazard models. Times between initial evaluation or diagnostic testing and later milestones were also compared by race/ethnicity. Results: We identified 682 males with definite or probable DMD of whom 61.7% were non-Hispanic White, 20.5% Hispanic, 10.6% other, and 7.2% non-Hispanic Black. Seven milestone events were studied (initial evaluation, first neurology/neuromuscular visit, diagnosis, corticosteroid treatment first offered, corticosteroid treatment started, first electrocardiogram or echocardiogram, and first pulmonary function testing). The first five milestone events occurred at an older age for non-Hispanic Black individuals compared to non-Hispanic White individuals. Time from diagnosis to first offering of corticosteroids and initiation of corticosteroid therapy was later for Hispanic individuals compared to non-Hispanic White individuals. When accounting for timing of initial evaluation/diagnosis, offering of corticosteroids continued to occur later, but first pulmonary testing occurred earlier, among Hispanic individuals compared to non-Hispanic Whites. No significant delays remained for non-Hispanic Black individuals after accounting for later initial evaluation/diagnosis. Conclusion: We described racial/ethnic differences in ages at selected diagnostic and treatment milestones. The most notable differences were significant delays for five of seven milestones in non-Hispanic Black individuals, which appeared to be attributable to later initial evaluation/diagnosis. Findings for Hispanic individuals were less consistent. Efforts to address barriers to early evaluation and diagnosis for non-Hispanic Black children with DMD may promote more timely initiation of recommended disease monitoring and interventions.

show abstract

Section: Study Population and Data Sourcesmentioning

confidence: 99%

Racial and Ethnic Differences in Timing of Diagnosis and Clinical Services Received in Duchenne Muscular Dystrophy

et al. 2023

View full text Add to dashboard Cite

show abstract

“…446 The United States prevalence is estimated to be 1.4 per 10,000 males. 447 DMD patients also develop respiratory insufficiency. The restrictive lung disease is a result of diaphragm and secondary respiratory muscle weakness.…”

Section: Introductionmentioning

confidence: 99%

Society for Cardiovascular Magnetic Resonance/European Society of Cardiovascular Imaging/American Society of Echocardiography/Society for Pediatric Radiology/North American Society for Cardiovascular Imaging Guidelines for the Use of Cardiac Magnetic Resonance in Pediatric Congenital and Acquired Heart Disease: Endorsed by The American Heart Association

Vaiyani

Anwar

Broberg

et al. 2022

Circ: Cardiovascular Imaging

View full text Add to dashboard Cite

Cardiovascular magnetic resonance has been utilized in the management and care of pediatric patients for nearly 40 years. It has evolved to become an invaluable tool in the assessment of the littlest of hearts for diagnosis, pre-interventional management and follow-up care. Although mentioned in a number of consensus and guidelines documents, an up-to-date, large, stand-alone guidance work for the use of cardiovascular magnetic resonance in pediatric congenital 36 and acquired 35 heart disease endorsed by numerous Societies involved in the care of these children is lacking. This guidelines document outlines the use of cardiovascular magnetic resonance in this patient population for a significant number of heart lesions in this age group and although admittedly, is not an exhaustive treatment, it does deal with an expansive list of many common clinical issues encountered in daily practice.

show abstract

“…The incidence of DMD is estimated to be ~ 1 / 5000 live male births [ 446 ]. The United States prevalence is estimated to be 1.4 per 10,000 males [ 447 ]. DMD patients also develop respiratory insufficiency.…”

Section: Introductionmentioning

confidence: 99%

Society for Cardiovascular Magnetic Resonance/European Society of Cardiovascular Imaging/American Society of Echocardiography/Society for Pediatric Radiology/North American Society for Cardiovascular Imaging Guidelines for the use of cardiovascular magnetic resonance in pediatric congenital and acquired heart disease

Vaiyani

Anwar

Broberg

et al. 2022

Journal of Cardiovascular Magnetic Resonance

View full text Add to dashboard Cite

Cardiovascular magnetic resonance (CMR) has been utilized in the management and care of pediatric patients for nearly 40 years. It has evolved to become an invaluable tool in the assessment of the littlest of hearts for diagnosis, pre-interventional management and follow-up care. Although mentioned in a number of consensus and guidelines documents, an up-to-date, large, stand-alone guidance work for the use of CMR in pediatric congenital 36 and acquired 35 heart disease endorsed by numerous Societies involved in the care of these children is lacking. This guidelines document outlines the use of CMR in this patient population for a significant number of heart lesions in this age group and although admittedly, is not an exhaustive treatment, it does deal with an expansive list of many common clinical issues encountered in daily practice.

show abstract

A Review of MD STARnet’s Research Contributions to Pediatric-Onset Dystrophinopathy in the United States; 2002-2017

Cited by 8 publications

References 30 publications

Racial and Ethnic Differences in Timing of Diagnosis and Clinical Services Received in Duchenne Muscular Dystrophy

Racial and Ethnic Differences in Timing of Diagnosis and Clinical Services Received in Duchenne Muscular Dystrophy

Contact Info

Product

Resources

About