J Natl Med Assoc
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Sickle cell disease (SCD) is the most common inherited blood disorder in the United States. The Cure Sickle Cell Initiative (CureSCi) was created by the National Heart, Lung and Blood Institute (NHLBI) to improve the lives of people with SCD by accelerating the advancement of safe and promising genetic therapies, engaging the SCD community and healthcare providers, and encouraging collaboration among stakeholders. CureSCi is a collaborative, patient-focused research effort that includes patients at every level of the Initiative. Patient engagement is a key component, particularly during the development of clinical trials. ⋯ Lessons learned from the community have helped to influence recommendations for clinical trial design and key messaging development for the Cure Sickle Cell Initiative.
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To describe the socioeconomic and healthcare-related effects of the COVID-19 pandemic, and willingness to receive a free COVID-19 vaccine, among African American/Black (AA/B) and Hispanic/Latinx (H/L) adults with asthma currently enrolled in a large trial. ⋯ AA/B and H/L adults with asthma may experience changes in the quality of their asthma care and increased socioeconomic stressors as a result of the COVID-19 pandemic and may be hesitant or unwilling to receive a COVID-19 vaccine.
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Evaluate racial and ethnic representation in clinical trials compared to the disease burden for diabetic retinopathy (DR) and diabetic macular edema (DME) within the United States (US). Diabetic retinopathy (DR) is currently the leading cause of blindness in American adults, affecting over 7.7 million individuals and disproportionately affecting Black Americans. Black patients represent 38.3 ± 16.5% of DME within the US population while White patients represented 44.6 ± 18.3% of the DME population in the US. ⋯ Black patients are under-represented by a 3.0-fold disparity in NIH trials and 4.5-fold disparity in industry trials for DME, while White patients are overrepresented. In industry-funded DR trials, there is a 2.1-fold disparity compared to disease burden. Clinical trials for diabetic eye disease should aim to recruit patients based on the disease burden, which enables measurements of treatment outcomes by race and promotes health equity.
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Case Reports
Traumatic brain Injury related schizophrenia in individuals without family history: A case series.
Traumatic brain injury (TBI) related mental disorder has been hypothesized in the literature before 1969 as the etiology of schizophrenia. TBI has been described as a complex of multiple genetic factors and interacting non-genetic factor influence. Most research on non-genetic factors has focused on the period from conception through childhood. ⋯ Hence, we present these case series of three different TBI related schizophrenia with no past psychiatric history nor positive family psychiatric background. Though there are scientific reports suggesting association between TBI and schizophrenia, most of the links are either based on pre-teen exposure to TBI or positive family history of mental illness. Discussed in line of current literature, this case series adds to the body of evidence on adult TBI related schizophrenia in individuals with no family history of mental health disorder.
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Rural populations have known challenges to both emergency and ambulatory care access resulting in delayed presentation and poorer outcomes for stroke and heart attack patients. Conditions such as diabetes and hypertension are known to be more common among rural populations. However, it is unclear whether there are any differences in underlying clinical factors and outcomes among patients presenting to a tertiary care center for advanced cardiac procedures from rural versus urban areas. ⋯ Our study identified rural-urban differences in baseline factors and procedural outcomes in patients presenting to a tertiary care center for cardiac procedures. Providers should anticipate that health disparities may be associated with more intervention and worse outcomes in their rural patients. Being aware of such differences may also help policy makers in directing health care funding to lower gaps in health care and access ultimately leading to better health outcomes.