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This essay highlights the author's methodology for taking a feminist approach to doing oral history at a large university—particularly her efforts to involve the wider university community in the project of creating an inclusive and multi-perspectival institutional history. This essay is part of a PHR forum on the theme of "Personal Reflections on Feminist Historical Methods," with additional essays by Judy Tzu-Chun Wu, Y. Yvon Wang, and Natalia Mehlman Petrzela. The forum is part of a larger PHR special issue, Feminist Histories. [ABSTRACT FROM AUTHOR]

An introduction to the journal is presented which discusses various reports within the issue on topics related to feminist history including biography writing in Asian American women's history, transgender auto-historiography, and health activism.

Introduction/Aims: With current and anticipated disease‐modifying treatments, including gene therapy, an early diagnosis for Duchenne muscular dystrophy (DMD) is crucial to assure maximum benefit. In 2009, a study from the Muscular Dystrophy Surveillance, Tracking, and Research Network (MD STARnet) showed an average diagnosis age of 5 years among males with DMD born from January 1, 1982 to December 31, 2000. Initiatives were implemented by the US Centers for Disease Control and Prevention (CDC) and patient organizations to reduce time to diagnosis. We conducted a follow‐up study in a surveillance cohort born after January 1, 2000 to determine whether there has been an improvement in time to diagnosis. Methods: We assessed the age of diagnosis among males with DMD born from January 1, 2000 to December 31, 2015 using data collected by six US MD STARnet surveillance sites (Colorado, Iowa, western New York State, the Piedmont region of North Carolina, South Carolina, and Utah). The analytic cohort included 221 males with definite or probable DMD diagnosis without a documented family history. We computed frequency count and percentage for categorical variables, and mean, median, and standard deviation (SD) for continuous variables. Results: The mean [median] ages in years of diagnostic milestones were: first signs, 2.7 [2.0]; first creatine kinase (CK), 4.6 [4.6]; DNA/muscle biopsy testing, 4.9 [4.8]; and time from first signs to diagnostic confirmation, 2.2 [1.4]. Discussion: The time interval between first signs of DMD and diagnosis remains unchanged at 2.2 years. This results in lost opportunities for timely genetic counseling, implementation of standards of care, initiation of glucocorticoids, and participation in clinical trials. See Editorial on pages 116‐117 in this issue [ABSTRACT FROM AUTHOR]

Introduction: Data on muscular dystrophies (MDs), a heterogeneous group of heritable diseases hallmarked by progressive muscle deterioration, are scarce. Objective: We describe cross‐sectional sociodemographic and clinical characteristics of individuals with congenital, distal, Emery‐Dreifuss, facioscapulohumeral, limb‐girdle, myotonic, or oculopharyngeal MD. Methods: The study was conducted in four sites (Arizona, Colorado, Iowa, and 12 western New York counties) as a pilot expansion of the Muscular Dystrophy Surveillance, Tracking and Research Network, funded by the Centers for Disease Control and Prevention. MDs were detected in healthcare facilities and administrative data sources using International Classification of Disease codes. Our sample contains 1,723 individuals with a MD diagnosis and a healthcare encounter between January 1, 2007 and December 31, 2011. Results and Conclusions: Individuals were mostly non‐Hispanic and white. Median ages ranged from 9.2 to 66.0 years. Most (98%) had health insurance. The proportion of individuals who were disabled or unable to work increased with age (range: 8.6–46.4%). People with limb‐girdle MD aged ≥18 years were more likely to be nonambulatory (range: 24.5–44.7%). The percentages of individuals with documented clinical interventions during the surveillance period were low. The most common cause of death was respiratory causes (46.3–57.1%); an ICD‐10 code for MD (G71.1 or G71.0) was reported for nearly one‐half. Our findings show wide variability in sociodemographic and clinical characteristics across MDs. [ABSTRACT FROM AUTHOR]

Background: Quantifying associations between genetic mutations and loss of ambulation (LoA) among males diagnosed with childhood‐onset dystrophinopathy is important for understanding variation in disease progression and may be useful in clinical trial design. Methods: Genetic and clinical data from the Muscular Dystrophy Surveillance, Tracking, and Research Network for 358 males born and diagnosed from 1982 to 2011 were analyzed. LoA was defined as the age at which independent ambulation ceased. Genetic mutations were defined by overall type (deletion/duplication/point mutation) and among deletions, those amenable to exon‐skipping therapy (exons 8, 20, 44–46, 51–53) and another group. Cox proportional hazards regression modeling was used to estimate hazard ratios (HRs) and 95% confidence intervals (CIs). Results: Mutation type did not predict time to LoA. Controlling for corticosteroids, Exons 8 (HR = 0.22; 95% CI = 0.08, 0.63) and 44 (HR = 0.30; 95% CI = 0.12, 0.78) were associated with delayed LoA compared to other exon deletions. Conclusions: Delayed LoA in males with mutations amenable to exon‐skipping therapy is consistent with previous studies. These findings suggest that clinical trials including exon 8 and 44 skippable males should consider mutation information prior to randomization. [ABSTRACT FROM AUTHOR]

Background: For 10 years, the Muscular Dystrophy Surveillance, Tracking, and Research Network (MD STARnet) conducted surveillance for Duchenne and Becker muscular dystrophy (DBMD). We piloted expanding surveillance to other MDs that vary in severity, onset, and sources of care. Methods: Our retrospective surveillance included individuals diagnosed with one of nine eligible MDs before or during the study period (January 2007–December 2011), one or more health encounters, and residence in one of four U.S. sites (Arizona, Colorado, Iowa, or western New York) at any time within the study period. We developed case definitions, surveillance protocols, and software applications for medical record abstraction, clinical review, and data pooling. Potential cases were identified by International Classification of Diseases, Ninth Revision, Clinical Modification (ICD‐9‐CM) codes 359.0, 359.1, and 359.21 and International Classification of Diseases, Tenth Revision (ICD‐10) codes G71.0 and G71.1. Descriptive statistics were compared by MD type. Percentage of MD cases identified by each ICD‐9‐CM code was calculated. Results: Of 2,862 cases, 32.9% were myotonic, dystrophy 25.8% DBMD, 9.7% facioscapulohumeral MD, and 9.1% limb‐girdle MD. Most cases were male (63.6%), non‐Hispanic (59.8%), and White (80.2%). About, half of cases were genetically diagnosed in self (39.1%) or family (6.2%). About, half had a family history of MD (48.9%). The hereditary progressive MD code (359.1) was the most common code for identifying eligible cases. The myotonic code (359.21) identified 83.4% of eligible myotonic dystrophy cases (786/943). Conclusions: MD STARnet is the only multisite, population‐based active surveillance system available for MD in the United States. Continuing our expanded surveillance will contribute important epidemiologic and health outcome information about several MDs. [ABSTRACT FROM AUTHOR]

Duchenne and Becker muscular dystrophy are X-linked neuromuscular disorders characterized by progressive muscle degeneration. Despite the involvement of multiple systems, secondary conditions among affected males have not been comprehensively described. Two hundred nine caregivers of affected males (aged 3-31 years) identified by the Muscular Dystrophy Surveillance, Tracking, and Research Network completed a mailed survey that included questions about secondary conditions impacting multiple body functions. The 5 most commonly reported conditions in males with Duchenne were cognitive deficits (38.4%), constipation (31.7%), anxiety (29.3%), depression (27.4%), and obesity (19.5%). Higher frequencies of anxiety, depression, and kidney stones were found among nonambulatory males compared to ambulatory males. Attention-deficit hyperactivity disorder (ADHD) was more common in ambulatory than nonambulatory males. These data support clinical care recommendations for monitoring of patients with Duchenne or Becker muscular dystrophy by a multidisciplinary team to prevent and treat conditions that may be secondary to the diagnosis. [ABSTRACT FROM AUTHOR]

B Description: b A 67-year-old male with obstructive sleep apnea (OSA) was admitted to our ICU for acute respiratory distress syndrome (ARDS) requiring endotracheal intubation after one week of dyspnea associated with fevers, vomiting, and diarrhea. B Introduction: b Legionnaires' disease (LD) and pulmonary histoplasmosis are important causes of community-acquired pneumonia (CAP). Thoracic CT revealed bilateral multifocal consolidations and urine legionella antigen test was positive, confirming the diagnosis of LD. [Extracted from the article]