How might members of a large, multi-institutional research and resource consortium foster justice, equity, diversity, and inclusion as central to its mission, goals, governance, and culture? These four principles, often referred to as JEDI, can be aspirational-but to be operationalized, they must be supported by concrete actions, investments, and a persistent long-term commitment to the principles themselves, which often requires self-reflection and course correction. We present here the iterative design process implemented across the Clinical Genome Resource (ClinGen) that led to the development of an action plan to operationalize JEDI principles across three major domains, with specific deliverables and commitments dedicated to each. Active involvement of consortium leadership, buy-in from its members at all levels, and support from NIH program staff at pivotal stages were essential to the success of this effort.
View Article and Find Full Text PDFBMJ Support Palliat Care
January 2025
Patients with advanced cancer often experience bothersome symptoms requiring specialist palliative care input. Oncology clinical trials commonly include a list of prohibited medications while on trial, to avoid potential drug interactions with the investigational product. This case series illustrates how recent opioid shortages combined with prohibited opioids in clinical trials significantly impacted cancer pain control and quality of life.
View Article and Find Full Text PDFBackground: While the striking impact of the COVID-19 pandemic on mental health, heath care access and lifestyle behaviors, including perceived health, diet, physical activity, and sleep has been reported, few studies have examined these domains jointly among pregnant and postpartum people in the early stages of the COVID-19 pandemic.
Methods: This mixed methods study was conducted among a subset of participants (n = 22) in a cohort study in Austin, Texas, who were pregnant or had recently delivered when the outbreak occurred. Measures were from the early second trimester up to 6 months postpartum.
Refractory seizures are common in pediatric neurology; consideration of whether seizures are acutely symptomatic of an underlying disease process is critical. In this case, a previously healthy 7-year-old patient presented with intractable focal seizures in the setting of a viral prodrome and headache. This case highlights a comprehensive work up of new-onset refractory seizures in a patient with features of encephalitis and describes a diagnostic quandary that ultimately led to a rare unifying diagnosis.
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