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Item Breast Cancer Disparities Through the Lens of the COVID-19 Pandemic(Springer Nature, 2021) Newman, Lisa; Fejerman, Laura; Pal, Tuya; Mema, Eralda; McGinty, Geraldine; Cheng, Alex; Levy, Mia; Momoh, Adeyiza; Troester, Melissa; Schneider, Bryan; McNeil, Lorna; Davis, Melissa; Babagbemi, Kemi; Hunt, Kelly; Medicine, School of MedicinePurpose of review: The emergency medicine and critical care needs of the COVID-19 pandemic forced a sudden and dramatic disruption of cancer screening and treatment programs in the USA during the winter and spring of 2020. This review commentary addresses the impact of the pandemic on racial/ethnic minorities such as African Americans and Hispanic-Latina Americans, with a focus on factors related to breast cancer. Recent findings: African Americans and Hispanic-Latina Americans experienced disproportionately higher morbidity and mortality from COVID-19; many of the same socioeconomic and tumor biology/genetic factors that explain breast cancer disparities are likely to account for COVID-19 outcome disparities. Summary: The breast cancer clinical and research community should partner with public health experts to ensure participation of diverse patients in COVID-19 treatment trials and vaccine programs and to overcome COVID-19-related breast health management delays that are likely to have been magnified among African Americans and Hispanic-Latina Americans.Item Congenital anatomic variations in a pancreas allograft: Is this consistent with safe transplant?(Elsevier, 2022) Walia, Sonal; Powelson, John A.; Lutz, Andrew J.; Fridell, Jonathan A.; Surgery, School of MedicineItem Crystalglobulinemia causing cutaneous vasculopathy and acute nephropathy in a kidney transplant patient(Elsevier, 2021) Wilson, Chase; Phillips, Carrie L.; Klenk, Alison; Kuhar, Matthew; Yaqub, Muhammad S.; Dermatology, School of MedicineWe present a rare case of crystalglobulinemia causing cutaneous vasculopathy and acute nephropathy in a 66-year-old female kidney transplant recipient. The patient presented with acute kidney injury (AKI), volume overload, anuria, retiform purpura, and blue-black necrosis of her toes. She received a living kidney transplant 7 months earlier with baseline creatinine of 0.6 mg/dl. Transplant kidney biopsy showed massive pseudo-thrombi filling glomerular capillary lumina. Electron microscopy of thrombi revealed an ultrastructural crystalline pattern of linear and curvilinear bundles with ladder-like periodicity typical of crystalglobulin-induced nephropathy. Similar crystalline pseudo-thrombi were detected ultrastructurally in a skin biopsy specimen, indicating systemic involvement. She required several sessions of hemodialysis. Plasmapheresis was initiated to decrease the number of circulating crystalglobulins. In order to treat the underlying paraproteinemia, the patient was started on bortezomib and dexamethasone. After treatment with five cycles of bortezomib, the patient's free kappa to lambda ratio improved to 2.35 from 5.52. Acute kidney injury (AKI) and the cutaneous vasculopathy gradually improved with treatment. This is an extremely rare occurrence of crystalglobulin in a living kidney transplant recipient.Item Eye on the Prize: Patient Outcomes Research in Medical Education(American Thoracic Society, 2023-09-27) Cooper, Avraham Z.; Jain, Snigdha; Santhosh, Lekshmi; Carlos, W. Graham, III; Medicine, School of MedicineThe overarching goal of medical education is to train clinicians who achieve and maintain competence in patient care. Although the field of medical education research has acknowledged the importance of education on clinical practices and outcomes, most research endeavors continue to focus on learner-centered outcomes, such as knowledge and attitudes. The absence of clinical and patient-centered outcomes in pulmonary and critical care medicine medical education research has been attributed to barriers at multiple levels, including financial, methodological, and practical considerations. This Perspective explores clinical outcomes relevant to pulmonary and critical care medicine educational research and offers strategies and solutions that educators can use to accomplish what many consider the “prize” of medical education research: an understanding of how our educational initiatives impact the health of patients.Item La recherche réalisée par les pharmaciens d’hôpitaux : une composante indispensable de la pratique quotidienne ou une attente irréaliste?(Canadian Society of Hospital Pharmacists, 2018-03) Tisdale, James E.; Medicine, School of MedicineItem Mobile devices for the remote acquisition of physiological and behavioral biomarkers in psychiatric clinical research(Elsevier, 2017-02) Adams, Zachary; McClure, Erin A.; Gray, Kevin M.; Danielson, Carla Kmett; Treiber, Frank A.; Ruggiero, Kenneth J.; Psychiatry, School of MedicinePsychiatric disorders are linked to a variety of biological, psychological, and contextual causes and consequences. Laboratory studies have elucidated the importance of several key physiological and behavioral biomarkers in the study of psychiatric disorders, but much less is known about the role of these biomarkers in naturalistic settings. These gaps are largely driven by methodological barriers to assessing biomarker data rapidly, reliably, and frequently outside the clinic or laboratory. Mobile health (mHealth) tools offer new opportunities to study relevant biomarkers in concert with other types of data (e.g., self-reports, global positioning system data). This review provides an overview on the state of this emerging field and describes examples from the literature where mHealth tools have been used to measure a wide array of biomarkers in the context of psychiatric functioning (e.g., psychological stress, anxiety, autism, substance use). We also outline advantages and special considerations for incorporating mHealth tools for remote biomarker measurement into studies of psychiatric illness and treatment and identify several specific opportunities for expanding this promising methodology. Integrating mHealth tools into this area may dramatically improve psychiatric science and facilitate highly personalized clinical care of psychiatric disorders.Item Privacy‐preserving record linkage across disparate institutions and datasets to enable a learning health system: The national COVID cohort collaborative (N3C) experience(Wiley, 2024-01-11) Tachinardi, Umberto; Grannis, Shaun J.; Michael, Sam G.; Misquitta, Leonie; Dahlin, Jayme; Sheikh, Usman; Kho, Abel; Phua, Jasmin; Rogovin, Sara S.; Amor, Benjamin; Choudhury, Maya; Sparks, Philip; Mannaa, Amin; Ljazouli, Saad; Saltz, Joel; Prior, Fred; Baghal, Ahmen; Gersing, Kenneth; Embi, Peter J.; Medicine, School of MedicineIntroduction: Research driven by real-world clinical data is increasingly vital to enabling learning health systems, but integrating such data from across disparate health systems is challenging. As part of the NCATS National COVID Cohort Collaborative (N3C), the N3C Data Enclave was established as a centralized repository of deidentified and harmonized COVID-19 patient data from institutions across the US. However, making this data most useful for research requires linking it with information such as mortality data, images, and viral variants. The objective of this project was to establish privacy-preserving record linkage (PPRL) methods to ensure that patient-level EHR data remains secure and private when governance-approved linkages with other datasets occur. Methods: Separate agreements and approval processes govern N3C data contribution and data access. The Linkage Honest Broker (LHB), an independent neutral party (the Regenstrief Institute), ensures data linkages are robust and secure by adding an extra layer of separation between protected health information and clinical data. The LHB's PPRL methods (including algorithms, processes, and governance) match patient records using "deidentified tokens," which are hashed combinations of identifier fields that define a match across data repositories without using patients' clear-text identifiers. Results: These methods enable three linkage functions: Deduplication, Linking Multiple Datasets, and Cohort Discovery. To date, two external repositories have been cross-linked. As of March 1, 2023, 43 sites have signed the LHB Agreement; 35 sites have sent tokens generated for 9 528 998 patients. In this initial cohort, the LHB identified 135 037 matches and 68 596 duplicates. Conclusion: This large-scale linkage study using deidentified datasets of varying characteristics established secure methods for protecting the privacy of N3C patient data when linked for research purposes. This technology has potential for use with registries for other diseases and conditions.Item Simultaneous pancreas and kidney transplant after bilateral lung transplant for a recipient with cystic fibrosis(Elsevier, 2021) Fridell, Jonathan A.; Lutz, Andrew J.; Powelson, John A.; Surgery, School of MedicineCystic fibrosis (CF) is an inherited autosomal recessive disorder. Despite optimized therapy, the majority of affected individuals ultimately die of respiratory failure. Lung transplantation is the only available therapy that deals definitively with the end-stage pulmonary disease and has become the treatment of choice for some of these patients. As patients with CF are living longer, extrapulmonary manifestations may develop including pancreatic failure, which manifests as exocrine insufficiency and CF-related diabetes (CFRD). Both of these can be managed through pancreas transplantation. We have previously reported our series of three simultaneous lung and pancreas transplants in patients with CF, which were complicated by surgical issues for both the thoracic and abdominal portions, rejection and resistant infections with disappointing long-term survival. Based on these results, a sequential approach was adopted: first, the thoracic transplant; and second, once the patient has recovered, the abdominal transplants. This is the first reported case of pancreas and kidney transplantation performed after a lung transplant in a patient with CF. It demonstrates a successful approach to treating CF with a lung transplant, and in an effort to improve the patient's long-term outcome, treating CFRD and pancreatic enzyme insufficiency, with a subsequent pancreas transplant.Item The Groundwater of Racial and Ethnic Disparities Research. A Statement from Circulation: Cardiovascular Quality & Outcomes(American Heart Association, 2021) Breathett, Khadijah; Spatz, Erica S.; Kramer, Daniel B.; Essien, Utibe R.; Wadhera, Rishi K.; Peterson, Pamela N.; Ho, P. Michael; Nallamothu, Brahmajee K.; Medicine, School of MedicineThe Fish. The Pond. The Groundwater. Imagine that you have a personal pond filled with fish. When viewing your pond, you notice that one fish has died, floating belly-up. You decide that the fish must have been ill and think nothing more of it. The next day, you notice that half of the fish in your pond are now dead. You are alarmed and decide to contact the neighborhood management services to investigate your pond. Something must be wrong with the local system. The following day, however, you discover that all of your neighbors with ponds have noticed the same thing. In fact, half of the fish are dead throughout all waterways in the entire state. At this point, it is clear something deeper must be wrong. This is when you need to analyze the groundwater feeding these ponds. The fish are not at fault, and not even the local systems. Rather the underlying structures through which the fish seek life has failed. Imagine that instead of fish, we are discussing patients. —Paraphrase of Groundwater Approach Metaphor by Love and Hayes-Greene of The Racial Equity Institute.