Cultural Heterogeneity in Americans' Definitions of Racism, Sexism, and Classism: Results from a Mixed-Methods Study.

This sequential mixed-methods study examines how Americans ascribe meanings to the concepts , , and . We first conduct interviews ( = 40) using a symbolic boundaries elicitation approach, gathering examples of scenarios that do and do not "count" as racism, sexism, and classism. We then use these examples as vignettes in a nationally representative survey experiment ( = 2,000).

The Roadmap to Integrate Diversity, Equity, and Inclusion in Hematology Clinical Trials: An American Society of Hematology Initiative.

Clinical trial design for classical hematologic diseases is difficult because samples sizes are often small and not representative of the disease population. ASH initiated a Roadmap project to identify barriers and make progress to integrate diversity, equity, and inclusion into trial design and conduct. Focus groups of international experts from across the clinical trial ecosystem were conducted.

Contrasting Approaches in the Implementation of GRADE Methodology in Guidelines for Haemophilia and Von Willebrand Disease.

Introduction: The 2024 ISTH clinical practice guideline (CPG) for treatment of congenital haemophilia, the NBDF-McMaster Guideline on Care Models for Haemophilia Management, and ASH ISTH NBDF WFH guidelines on the diagnosis and management of VWD all utilised GRADE methodology.

Aim: Discuss missed opportunities and the methodological approach of the ISTH Guideline in contrast to how GRADE was previously applied in rare diseases.

Methods: Critically analyse the methodology of each guideline along with best practices in the use of GRADE.

International Society on Thrombosis and Haemostasis Clinical Practice Guideline for Treatment of Congenital Haemophilia-A Critical Appraisal.

Introduction: Evidence-based clinical practice guidelines drive optimal patient care and facilitate access to high-quality treatment. Creating guidelines for rare diseases such as haemophilia, where evidence does not often come from randomized controlled trials but from non-randomized and well-designed observational studies and real-world data, is challenging. The methodology used for assessing available evidence should consider this critical fact.

Giving Choice a Voice: Commentary on Development of the World Federation of Hemophilia Shared Decision-Making Tool.

The shared decision-making (SDM) tool developed by the World Federation of Hemophilia (WFH) provides a clear and concise overview of the process by which people with haemophilia (PwH) can collaborate with their healthcare professionals (HCPs) to engage and arrive at a therapeutic decision. This tool will be useful for all people with all bleeding disorders, not just PwH.

A novel gene editing lexicon strategy for the haemophilia community: Research plan for development and preliminary results.

Introduction: Despite the progress in gene editing platforms like CRISPR/Cas9 with the potential to transform the standard of care for haemophilia, the language used to explain and discuss gene editing is not aligned across the haemophilia community. Here, we present the objective and rationale for developing a clear, consistent, and globally aligned gene editing lexicon to address these communication gaps.

Methods: Effectively communicating complex gene editing concepts requires a clear and consistent vocabulary.

Development of the coreHEM mental health patient-reported outcome measure - A novel mental health outlook measure for people with haemophilia.

Introduction: Currently, no quality-of-life instrument exists that captures the full experience of the mental health outlook (MHO), a coreHEM core outcome, in people with haemophilia, including the potential transformational experience of receiving gene therapy.

Aim: To describe the methods used to develop a content validated patient-reported outcome measure (PROM) that measures MHO for people with haemophilia.

Methods: A conceptual framework, developed from a literature/evidence review, was used to create an interview guide and draft a questionnaire.

Chronic Total Occlusion of the Left Main and Severe Aortic Stenosis.

Concomitant aortic stenosis and coronary artery disease in the elderly population is frequent and the proper therapeutic approach is a matter of debate. We present 2 challenging cases of patients affected by severe aortic stenosis and chronic total occlusion of the left main, demonstrating the safety and feasibility of transcatheter aortic valve replacement, performed both with balloon-expandable and self-expanding valves.

Joint health and pain in the changing hemophilia treatment landscape.

Introduction: Hemophilia is an inherited bleeding disorder. Bleeding, and in particular joint hemorrhage results in chronic arthropathy and disability. Acute and chronic pain are frequent and limit activity and participation and result in decreased health-related quality of life.

Race and ethnicity reporting and representation in hemophilia clinical trials.

Racial and ethnic representativeness in clinical trials is crucial to mitigate disparities in outcomes; however, diversity among hemophilia trials is unknown. The aim of this study is to examine the reporting and representation of race and ethnicity in trials of people with hemophilia (PwH). In this cross-sectional study, the ClinicalTrials.

Neuroinflammatory markers in patients with haemophilia and healthy controls: Where are the differences?

Introduction: People with haemophilia (PwH) suffer from haemophilic arthropathy which is accompanied by acute and chronic inflammation. The aim of this study was to examine the neuroinflammatory network operative in PwH and to compare it to healthy controls.

Material And Methods: Blood samples were collected from 41 PwH (age 54.

Highly Functionalized SWCNTs with a Dopamine Derivative as a Support for Pd Nanoparticles: A Recyclable Catalyst for the Reduction of Nitro Compounds and the Heck Reaction.

Single-walled carbon nanotubes (SWCNTs) were functionalized with a dopamine derivative in which the amine group was converted to azide (dopamine azide). The direct reaction of SWCNTs and dopamine azide in o-dichlorobenzene at high temperature (160 °C) led to very highly functionalized CNTs (≈60 wt.%).

Effects of SARS-CoV-2 on Pulmonary Function and Muscle Strength Testing in Military Subjects According to the Period of Infection: Cross-Sectional Study.

Background: Pulmonary function can be impaired as a long-term consequence of SARS-CoV-2 infection. The aim of this study was to evaluate the effect of SARS-CoV-2 infection on pulmonary function, exercise tolerance, and muscle strength in healthy middle-aged military outpatients according during the period of infection.

Methods: A cross-sectional study was carried out from March 2020 to November 2022 at the Military Hospital "Celio" (Rome, Italy).

A review of the rationale for gene therapy for hemophilia A with inhibitors: one-shot tolerance and treatment?

The therapeutic landscape for people living with hemophilia A (PwHA) has changed dramatically in recent years, but many clinical challenges remain, including the development of inhibitory antibodies directed against factor VIII (FVIII) that occur in approximately 30% of people with severe hemophilia A. Emicizumab, an FVIII mimetic bispecific monoclonal antibody, provides safe and effective bleeding prophylaxis for many PwHA, but clinicians still explore therapeutic strategies that result in immunologic tolerance to FVIII to enable effective treatment with FVIII for problematic bleeding events. This immune tolerance induction (ITI) to FVIII is typically accomplished through repeated long-term exposure to FVIII using a variety of protocols.

The National Hemophilia Foundation State of the Science Research Summit initiative: executive summary.

Introduction: The National Hemophilia Foundation State of the Science Research Summit initiative sought to unify research efforts in the US inherited bleeding disorders (BDs) community around key topics of importance to people living with inherited BDs, the lived experience experts.

Areas Covered: This community-led and -informed project focused on six broad areas - hemophilia A or B; von Willebrand Disease (VWD), platelet dysfunctions and other mucocutaneous inherited BDs; ultra-rare inherited BDs; the unique challenges of people with the potential to menstruate with inherited BDs; diversity, equity and inclusion, health services research, and implementation science; and facilitating research in the inherited BD community through designing an optimizied research infrastructure, enabling resources and funding, and furthering workforce capabilities required to execute the research priorities.

Expert Opinion: The work summarized here, and in the accompanying supplement manuscripts , has implications not only for the US population but for people globally who have inherited BDs.

Patient-centered pharmacovigilance: priority actions from the inherited bleeding disorders community.

Unlabelled: Pharmacovigilance, the science and practice of monitoring the effects of medicinals and their safety, is the responsibility of all stakeholders involved in the development, manufacture, regulation, distribution, prescription, and use of drugs and devices. The patient is the stakeholder most impacted by and the greatest source of information on safety issues. It is rare, however, for the patient to take a central role and exert leadership in the design and execution of pharmacovigilance.

Return to Sport Activities and Risk of Reinjury Following Primary Anterior Cruciate Ligament Reconstruction.

This article examines the elements that affect the return to sport (RTS) and the risk and percentages of reinjury following a prior primary anterior cruciate ligament reconstruction (ACLR). The prevalence of RTS following ACLR ranges from 71% to 83%. Concerning elements affecting RTS, a limb symmetry index score of 90 or more duplicates the likelihood of RTS and triplicates it when the International Knee Documentation Committee (IKDC) score is 95 or more, irrespective of age.

Painful total knee arthroplasty: Infrapatellar branch of the saphenous nerve selective denervation. A case series.

Introduction: Total knee arthroplasty (TKA) is a reliable and widespread solution for knee osteoarthritis treatment, but about 20% of the patients complains of persisting pain. Neuroma formation in the IPBSN (infrapatellar branch of the saphenous nerve) is an undervalued cause of persistent anterior pain after TKA. The aim of this study was to evaluate the effectiveness of the selective neuroma denervation on patients satisfaction and pain improvement.

Achieving access to haemophilia care in low-income and lower-middle-income countries: expanded Humanitarian Aid Program of the World Federation of Hemophilia after 5 years.

Highly effective treatment of haemophilia A and B is primarily available to 15% of the world's population, in high-income countries. In low-income countries (LICs) and lower-middle-income countries (LMICs), morbidity and mortality are high because of greatly reduced access to diagnosis, care, and treatment. We report the challenges and impact after the first 5 years (mid-2015-2020) of the expanded World Federation of Hemophilia (WFH) Humanitarian Aid Program (HAP).