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The ASH Research Collaborative Sickle Cell Disease Research Network: past, present, and future.

AbstractHistorically, sickle cell disease (SCD) has been overshadowed by progress in other hematologic disorders, but recent advances are reshaping its clinical and research landscape. Despite SCD reducing life expectancy by >20 years even with optimal care, transformative initiatives are fostering hope for improved outcomes. The American Society of Hematology (ASH) established the ASH Research Collaborative Sickle Cell Disease Research Network as a comprehensive program to revolutionize SCD research in the United States. This Network comprises a collection of innovative, research-focused coop

Skip pattern approach toward the early access of innovative anticancer drugs.

BackgroundWith the rapid development of innovative anticancer treatments, the optimization of tools able to accelerate the access of new drugs to the market by the regulatory authority is a major issue. The aim of the project was to propose a reliable methodological pathway for the assessment of clinical value of new therapeutic innovative options, to objectively identify drugs which deserve early access (EA) priority for solid and possibly in other cancer scenarios, such as the hematological ones.Materials and methodsAfter a comprehensive review of the European Public Assessment Report of 21

Improving Outcome-Driven Care in Multiple Myeloma Using Patient-Reported Outcomes: A Qualitative Evaluation Study.

BACKGROUND AND OBJECTIVE: Multiple myeloma is an incurable disease with a considerable illness and treatment burden, which negatively impacts patients' quality of life. This study aimed to evaluate the implementation of multiple myeloma care in five Dutch hospitals, related to the three objectives of outcome-driven care, which are defined as (1) providing information for shared decision making in individual patient care, (2) supporting the learning capacity of healthcare professionals and healthcare institutions through benchmarking and (3) developing outcome-driven and patient-centred contrac

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… Using an implementation science approach to implement and evaluate patient-reported outcome measures (PROM) initiatives in routine care settings. Qual Life Res. 2021;30(11):3015–3033. doi: 10.1007/s11136-020-02564-9. 31. Lavallee DC, Chenok KE, Love RM, et al. …

Abstracts from the 13th International Conference for Healthcare and Medical Students (ICHAMS).

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Adaptation of digital integration of PROMs and PREMs in oncology during implementation: a scoping review.

PurposeDigital tools facilitate the timely collection of patient-reported outcome and experience measures (ePROMs/PREMs), but there is no consistent reporting on the technical and content adaptations made essential to implementing these digital tools in a specific context. Adaptations made to ePROMs/ePREMs can improve data quality, clinical management, and patient outcomes. We explored how studies report on adaptations and the reasons and types of these during an implementation process of ePROMs/ePREMs systems in routine cancer care.MethodsWe conducted a systematic scoping review. We searched

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… Stover AM Haverman L Van Oers HA Greenhalgh J Potter CM Using an implementation science approach to implement and evaluate patient-reported outcome measures (PROM) initiatives in routine care settings Qual Life Res 2021 30 11 3015 3033 32651805 10.1007/s11136-020-02564-9 PMC8528754 Stover AM, Haverman … L, Van Oers HA, Greenhalgh J, Potter CM (2021) Using an implementation science approach to implement and evaluate patient-reported outcome measures (PROM) initiatives in routine care settings. …

Primary prophylaxis of invasive fungal diseases in patients with haematological malignancies: 2022 update of the recommendations of the Infectious Diseases Working Party (AGIHO) of the German Society for Haematology and Medical Oncology (DGHO).

Patients with haematological malignancies (HM) are at high risk of developing invasive fungal disease (IFD) with high morbidity and attributable mortality. We reviewed data published until September 2021 to update the 2017 antifungal prophylaxis recommendations of the German Society of Haematology and Medical Oncology (DGHO). The strong recommendation to administer antifungal prophylaxis in patients with HM with long-lasting neutropenia, i.e. 7 days remains unchanged. Posaconazole remains the drug of choice for mould-active prophylaxis in these patients. Novel treatment options in HM, such as

Оценка роли высокомерных пресноводных данных в коррекции при проведении исследований в области множественных склерозов: тематическое исследование.

ЦЕЛЬ: С учетом того, что в прошлом в рамках многочисленных исследований по склерозу (МС) использовались ограниченные связующие устройства с использованием административных данных о состоянии здоровья населения, в настоящем кратком докладе дается оценка воздействия включения высокомерной косвенной информации о слиянии в исследования по склерозам. Для оценки изменений в оценках воздействия на связь между лекарственными препаратами, изменяющими болезни (ДМР), и смертностью от всех причин в группе MS из Британской Колумбии (БК), Канада, мы внедрили высокомерные и высокомерные методы оценки риска з

Incivility Is Associated with Burnout and Reduced Compassion Satisfaction: A Mixed-Method Study to Identify Causes of Burnout among Oncology Clinical Research Coordinators.

While oncology clinical research coordinators (CRCs) experience a combination of factors that are thought to put them at increased risk for burnout, very little research has been conducted to understand the risk factors associated with burnout among CRCs. We used a mixed-method approach, including self-report questionnaires to assess burnout and compassion satisfaction, as well as individual and interpersonal variables hypothesized to impact CRC well-being. We also conducted a focus group to gain a more nuanced understanding of coordinators' experiences around burnout, teamwork, resilience, an

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… The focus group was facilitated by a trained member of the research team and followed a semi-structured discussion guide based on the Consolidated Framework for Implementation Research (CFIR) [ 34 ], a widely used implementation science framework. … Fostering implementation of health services research findings into practice: A consolidated framework for advancing implementation science. Implement. Sci. 2009;4:50. doi: 10.1186/1748-5908-4-50. 32. Bazeley P. Qualitative Data Analysis: Practical Strategies. …

A multidisciplinary perspective on the complex interactions between sleep, circadian, and metabolic disruption in cancer patients.

Sleep is a basic need that is frequently set aside in modern societies. This leads to profound but complex physiological maladaptations in the body commonly referred to as circadian disruption, which recently has been characterized as a carcinogenic factor and reason for poor treatment outcomes, shortened survival, and reduced quality of life in cancer patients. As sleep and circadian physiology in cancer patients spans several disciplines including nursing science, neurology, oncology, molecular biology and medical technology, there is a lack of comprehensive and integrated approaches to deal

Умственные меры по охране психического здоровья взрослых работников: обзор.

Справочная информация: Цель этого аналитического обзора заключалась в выявлении и обобщении данных о мерах, принимаемых на основе сознательности и направленных на достижение результатов в области психического здоровья работающих взрослых. Методы: Был проведен всеобъемлющий поиск four электронные базы данных (PubMed, Scopus, Web of Science и OT проситель) до октября 2025. Обзор проводился в соответствии с руководящими принципами ПРИСМА-СКР. Методологическое качество оценивалось с использованием классификации Оксфордского центра научно обоснованной медицины (OCEBM). Протокол был в перспективе за

Меры по согласованию и износостойкости в рамках системы многоразового склероза-системного обзора доказательств и применимости используемых систем скоринга в клинических и реальных данных.

В случае множественного склероза (MS) все большее внимание уделяется соприкосновениям и слабостям, влияющим на курс болезни, лечение и качество жизни. Цель этого обзора литературы заключается в оценке фактических данных, сильных и слабых сторон инструментов оценки соответствия и слабости у людей с НР (МСУ). МЕТОДЫ: Мы провели всеобъемлющий систематический обзор литературы, включая исследования, опубликованные между 2014 и 2024 с первоначальными данными или систематическими обзорами показателей комординации или слабости в ПТУС с использованием PRISMA 2020 методология. Были проанализированы меры

Efficacy and safety of chimeric antigen receptor T-cell (CAR-T) therapy in hematologic malignancies: a living systematic review (protocol).

ObjectiveTo determine the efficacy and safety of CAR-T therapy in the treatment of patients with hematologic malignancies, in comparison with other current therapies.DesignA living systematic review.MethodsWe will include randomized trials evaluating the effect of CAR-T therapy versus other active treatments, hematopoietic stem cell transplantation, best supportive care or any other intervention in patients with hematologic malignancies. Non-randomized primary studies will be searched in case we found no direct evidence from randomized controlled trials. Two reviewers will independently screen

The contribution of Cyprus to non-communicable diseases and biomedical research from 2002 to 2013: implications for evidence-based health policy.

BackgroundNon-communicable diseases (NCDs) are the leading causes of disease burden and mortality at the European level and in Cyprus. This research was conducted to map the research activities of Cypriot institutions in five NCDs, namely oncology, cardiovascular diseases, diabetes, mental health and respiratory conditions.MethodsFor the period 2002-2013, research in Cyprus was assessed on its biomedical outputs and compared to the rest of Europe relative to their GDP. The research output in the five NCDs was obtained and contrasted to their respective disease burdens. The results from each of

Physical Characteristics Pertaining to Health-Related Quality of Life in Hospitalized Patients With Hematologic Malignancies: A Cross-Sectional Study.

Background Patients with hematologic malignancies often experience pre-existing physical decline, which is further exacerbated during chemotherapy, resulting in markedly reduced health-related quality of life (HRQOL). These functional impairments are largely attributable to modifiable factors such as physical inactivity and malnutrition. However, the precise relationships among body composition, physical function, and HRQOL in this population remain insufficiently understood. Therefore, this study aimed to identify key physical determinants of HRQOL in hospitalized patients with hematologic ma

Design specifications for biomedical virtual twins in engineered adoptive cellular immunotherapies.

In (immune)oncology, virtual twins (VTs) offer patient-individual decision support. Nevertheless, current VTs do not incorporate the unique properties of engineered adoptive cellular immunotherapies (eACIs). Here, we outline the minimal design specifications for VTs for engineered ACIs (eACI-VTs) to model the complex interplay between cell product and patient physiology. We motivate utilizing VTs in eACIs to provide decision support and reflect on how eACI-VTs can support the widespread use of eACIs.

The global, regional, and national burden of cancer, 1990-2023, with forecasts to 2050: a systematic analysis for the Global Burden of Disease Study 2023.

BACKGROUND: Cancer is a leading cause of death globally. Accurate cancer burden information is crucial for policy planning, but many countries do not have up-to-date cancer surveillance data. To inform global cancer-control efforts, we used the Global Burden of Diseases, Injuries, and Risk Factors Study (GBD) 2023 framework to generate and analyse estimates of cancer burden for 47 cancer types or groupings by age, sex, and 204 countries and territories from 1990 to 2023, cancer burden attributable to selected risk factors from 1990 to 2023, and forecasted cancer burden up to 2050. METHODS: Ca

Implementing guidelines to prevent cancer associated thrombosis: how can we do better?

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The effect of patient-centered empowerment program through telenursing on self-management in people with multiple sclerosis: a double-blinded randomized clinical trial.

BACKGROUND: Multiple sclerosis (MS) is a chronic disease that presents individuals with various caregiving challenges, making their empowerment based on their real needs essential. The aim of this study was to determine the impact of a patient-centered empowerment program through telenursing on the self-management of people with multiple sclerosis (PwMS). METHODS: The present study was a double-blinded, randomized clinical trial conducted on 90 PwMS attending MS Society using a convenience sampling method with random block allocation. The inclusion criteria were a definite diagnosis of MS for

Implementation of a hospital-at-home (HAH) unit for hematological patients during the COVID-19 pandemic: safety and feasibility.

Background"Hospital-at-home" (HAH) programs have been shown to optimize resource utilization, shorten hospitalization and prevent nosocomial infection.MethodsWe retrospectively analysed data regarding implementation of an HAH unit for caring patients with hematological malignancies in our center, during the COVID-19 pandemic.ResultsBetween January and November 2020, 105 patients were treated in the HAH unit for a total of 204 episodes. Nine patients with multiple myeloma (MM) received autologous HSCT (auto-HSCT). Three patients with acute myeloid leukemia (AML) received consolidation therapy,

The organization, weaknesses, and challenges of the control of thalidomide in Brazil: A review.

The drug thalidomide has resurged in the world market under restrictive conditions for marketing and use. In Brazil, there are still cases of pregnant women using thalidomide even after the implementation of laws that regulate the control of use (Law No. 10.651/2003 and Collegiate Board Resolution No. 11/2011). The objective of this study was to discuss the control of thalidomide use in Brazil, based on a scoping review of the scientific literature, documents, and data from the Ministry of Health. A total of 51 studies and documents related to the following subthemes were selected: (1) organiz

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… Implementation Science [Internet]. 2010 9 [cited 2019 Apr 14]; 5 ( 69 ): 2010 Available from: https://implementationscience.biomedcentral.com/articles/10.1186/1748-5908-5-69 10.1186/1748-5908-5-69 PMC2954944 20854677 22 Moher D , Liberati A , Tetzlaff J , Altman DG , Altman D , Antes G , et al Preferred …