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Background The increased use of electronic health records (EHRs) has resulted in new opportunities for research, but also raises concerns regarding privacy, confidentiality, and patient awareness. Because public trust is essential to the success of the research enterprise, patient perspectives are essential to the development and implementation of ethical approaches to the research use of EHRs. Yet, little is known about patients' views and expectations regarding various approaches to seeking permission for research use of their EHR data. Methods We conducted semi-structured interviews with 120 patients in four counties in diverse regions of the southeastern United States Appalachia, the Mississippi Delta, and the Piedmont area of North Carolina. We asked participants to consider, from multiple stakeholder perspectives, the advantages and disadvantages of three approaches to notifying patients of, or obtaining permission for, research use of their EHR data; whether they believed it would be acceptable if their healthcare organization used each approach; and which approach would be most appropriate. Results Nearly all participants said General Notification, Broad Permission, and Categorical Permission would each be acceptable approaches to notification of, or permission for, EHR research. https://www.selleckchem.com/products/valproic-acid.html Over half identified Broad Permission as the most appropriate approach. Across all of these discussions, major themes included the importance of clarity, simplicity, and usability of patient-facing materials, as well as the level of transparency, trustworthiness, and respect for patients the approach conveys. Conclusions Our findings help to inform the development and implementation of ethical approaches to the research use of EHRs by identifying key patient considerations regarding various approaches to permission and suggesting potential actions for healthcare organizations and researchers.Objective The Coronavirus disease (COVID-19) outbreak has evolved into a pandemic crisis, with King County in Washington State emerging as the early US epicenter. A literature review revealed few reports providing front-line clinical and research teams guidance related to multilevel, rapidly evolving COVID-19 directives.Method The Rapid Assessment Procedure Informed Clinical Ethnography (RAPICE) method was used to develop a clinical case series and conduct participant observation during an ongoing comparative effectiveness trial of peer-integrated, patient-centered interventions after traumatic injury. Participants were patients enrolled in the intervention arm of the ongoing trial, as well as front-line clinicians, patient peer interventionists, and clinical research team members implementing the trial. All participants were exposed to the Washington State COVID-19 outbreak.Results Primary and secondary COVID-19 prevention strategies were feasibly integrated into ongoing care coordination and behavioral interventions for at-risk patients. Beyond the compilation of case studies, as an iterative method, RAPICE data collection naturalistically evolved to include observations of intervention team activity occurring within the larger pandemic epicenter context. A daily clinical research team huddle that flexibly accommodated virtual participation was also feasibly implemented.Conclusions Primary and secondary COVID-19 prevention strategies can be feasibly integrated into ongoing clinical interventions during the pandemic. Routine, proactive clinical and research team communication that transparently addresses ethical tensions and health-sustaining activities may promote well-being for providers grappling with rapidly evolving pandemic directives. Proactive assessments of individual provider vulnerabilities for severe COVID-19 related respiratory illness may also be a crucial element of the health care system pandemic responses.OBJECTIVES The purpose of this retrospective study was to assess outcomes of cats referred to a specialized adoption program for feline leukemia virus (FeLV)-positive cats. METHODS Cats referred to an FeLV-specific adoption program between January 2018 and July 2019 at an animal shelter in Austin, TX, USA, were first identified based on their putative FeLV status as reported by the referring shelter, rescue group, veterinarian or individual. Each cat was re-screened for FeLV upon admission and subsequently deemed infected or uninfected. Data on cat source, admission date, outcome date, outcome type, signalment and comorbidities at the time of admission were extracted from the shelter database. Outcomes were recorded up to 15 December 2019. RESULTS In total, 801 cats suspected to be infected with FeLV were referred to the FeLV adoption program. Of these, 149 (18.6%) were ultimately deemed uninfected, and infection was confirmed in 652 (81.4%) cats. Adoption was the most common outcome for FeLV-infected cats (n = 514 cats; 78.8%), followed by euthanasia or death in care (n = 109; 16.7%). Upper respiratory infection (URI) was the most common comorbidity in FeLV-infected cats (n = 106; 16.3%) at the time of admission, which was not significantly different than URI in the cats that were deemed not to be infected with FeLV (n = 29; 19.5%). CONCLUSIONS AND RELEVANCE This study demonstrated high national demand for a lifesaving option for cats diagnosed with FeLV. FeLV infections could not be confirmed in approximately one in five cats referred to the FeLV adoption program, a reminder of the risk behind basing the fate of a cat on a single positive test result. The majority of cats referred to the FeLV program were adopted, demonstrating that programs centered on adopter education and post-adoption support can create lifesaving outcomes for most FeLV-infected cats, despite uncertainty regarding their long-term prognosis.Background Arthrochalasia type Ehlers-Danlos Syndrome (EDS) is a connective tissue disease characterized by severe generalized joint hypermobility, congenital bilateral hip dislocations, and recurrent joint subluxations and dislocations. Only one study has reported bone fragility resulting in fractures. The genetic abnormality underlying this disorder is a variant in the COL1A1 gene causing entire or partial loss of exon 6, resulting in defective type 1 collagen synthesis. Case Report We report a female infant born at 35 weeks of gestation presenting with pathologic skull fracture following vaginal delivery. Genetic testing revealed a pathogenic variant in the COL1A1 gene (c.472-1G > C), consistent with arthrochalasia type EDS, reported previously. Conclusion This report adds pathologic fractures to the phenotypic breadth of this type of EDS and reinforces the importance of including the condition on the differential diagnosis when early onset non-accidental injury or trauma is being considered.
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