Advancing Health Equity: A Collaborative Framework to Address HIV Disparities in Georgia and Louisiana through Data, Education, and Policy Initiatives.

The United States grapples with over 30,000 new HIV infections annually, a challenge exacerbated by delayed diagnosis and treatment. HIV stigma hinders data collection and contributes to health disparities. High-quality data and a community-driven approach are critical to reducing these disparities.

A rare partnership: patient community and industry collaboration to shape the impact of real-world evidence on the rare disease ecosystem.

People with rare lysosomal storage diseases face challenges in their care that arise from disease complexity and heterogeneity, compounded by many healthcare professionals being unfamiliar with these diseases. These challenges can result in long diagnostic journeys and inadequate care. Over 30 years ago, the Rare Disease Registries for Gaucher, Fabry, Mucopolysaccharidosis type I and Pompe diseases were established to address knowledge gaps in disease natural history, clinical manifestations of disease and treatment outcomes.

Automated Screening to Enhance Proactive Consultation-Liaison Psychiatry Services in Acute Medicine Units: Evaluation of Service Outcomes.

Proactive consultation-liaison (C-L) psychiatry aims to meet the mental health needs of medical-surgical populations-many of which go unmet by the conventional C-L model-through systematic screening and integrated care. We implemented an automated screening list to enhance case identification of an existing proactive C-L service and evaluated service metrics along with clinician- and patient-reported outcomes. Service outcomes were evaluated using historical and contemporary comparison data.

Genomic attributes of airway commensal bacteria and mucosa.

Microbial communities at the airway mucosal barrier are conserved and highly ordered, in likelihood reflecting co-evolution with human host factors. Freed of selection to digest nutrients, the airway microbiome underpins cognate management of mucosal immunity and pathogen resistance. We show here the initial results of systematic culture and whole-genome sequencing of the thoracic airway bacteria, identifying 52 novel species amongst 126 organisms that constitute 75% of commensals typically present in heathy individuals.

Real-life impacts of olipudase alfa: The experience of patients and families taking an enzyme replacement therapy for acid sphingomyelinase deficiency.

Background: Acid Sphingomyelinase Deficiency (ASMD) is an ultra-rare autosomal recessive lysosomal storage disorder characterized by intracellular lipid accumulation resulting from reduced function of acid sphingomyelinase. Olipudase alfa, an enzyme replacement therapy, was recently approved in several countries for the treatment of the non-neurologic manifestations of ASMD. Studies demonstrate improvement in organomegaly, pulmonary function and lipid profiles with olipudase alfa, yet little is known about its impact on quality of life (QoL) for patients and caregivers.