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The European Gaucher Alliance: a survey of member patient organisations' activities, healthcare environments and concerns.

BackgroundThe European Gaucher Alliance (EGA) was established in 1994 and constituted in 2008 as an umbrella group supporting patient organisations for Gaucher disease. Every two years, the EGA conducts a questionnaire survey of member associations to help develop its priorities and annual work programme. Results of the latest survey are presented.MethodsBetween June 2012 and April 2013, the 36 members and associate members of the EGA were asked to complete a questionnaire detailing membership numbers, disease specific treatments used by patients, means of access to treatment, availability of

Targeting Metabolic Reprogramming in Acute Myeloid Leukemia.

The cancer metabolic reprogramming allows the maintenance of tumor proliferation, expansion and survival by altering key bioenergetics, biosynthetic and redox functions to meet the higher demands of tumor cells. In addition, several metabolites are also needed to perform signaling functions that further promote tumor growth and progression. These metabolic alterations have been exploited in different cancers, including acute myeloid leukemia, as novel therapeutic strategies both in preclinical models and clinical trials. Here, we review the complexity of acute myeloid leukemia (AML) metabolism

Burden of cancer in the Eastern Mediterranean Region, 2005-2015: findings from the Global Burden of Disease 2015 Study.

ObjectivesTo estimate incidence, mortality, and disability-adjusted life years (DALYs) caused by cancer in the Eastern Mediterranean Region (EMR) between 2005 and 2015.MethodsVital registration system and cancer registry data from the EMR region were analyzed for 29 cancer groups in 22 EMR countries using the Global Burden of Disease Study 2015 methodology.ResultsIn 2015, cancer was responsible for 9.4% of all deaths and 5.1% of all DALYs. It accounted for 722,646 new cases, 379,093 deaths, and 11.7 million DALYs. Between 2005 and 2015, incident cases increased by 46%, deaths by 33%, and DALYs

Резюме докладов 51st Конференция Европейского общества генетики человека: плакаты

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Comparing the Incidence of Falls/Fractures in Parkinson's Disease Patients in the US Population.

Patients with Parkinson's disease (PD) may experience falls and/or fractures as a result of disease symptoms. There are limited data available from long-term studies estimating the incidence of falls/fractures in patients with PD. The objective was to compare the incidence rate of falls/fractures in PD patients with non-PD patients in a US population. This was a retrospective study using a US-based claims database (Truven Health MarketScan®) that compared the incidence rate of falls/fractures in PD subjects with non-PD subjects. The study period included the 12 months prior to index date (defi

A decision exercise to engage cancer patients and families in deliberation about Medicare coverage for advanced cancer care.

BackgroundConcerns about unsustainable costs in the US Medicare program loom as the number of retirees increase and experiences serious and costly illnesses like cancer. Engagement of stakeholders, particularly cancer patients and their families, in prioritizing insured services offers a valuable strategy for informing Medicare coverage policy. We designed and evaluated a decision exercise that allowed cancer patients and family members to choose Medicare benefits for advanced cancer patients.MethodsThe decision tool, Choosing Health plans All Together (CHAT) was modified to select services fo

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… Administered by the U.S. federal government since 1966, Medicare is the national social insurance program that guarantees access to health insurance for Americans aged 65 and older who have worked and paid into the system (or who are married to someone who has), and younger people with disabilities. …

Европейский статус карты CAR-T и будущие направления улучшения доступа к клеточной терапии CAR для гематологовых маньяков.

Несмотря на свои большие надежды, осуществление терапии CAR-T является индивидуализированным, технически сложным и дорогостоящим лечением, которое по-прежнему сопряжено с трудностями, что затрудняет доступ пациентов в различных странах и внутри стран. С тех пор 2018, six в Европе (т.е. Европейская экономическая зона; утвержден ЕС) 15 Гематологические признаки злоумышленничества. Чтобы лучше понять доступ пациентов к коммерческой терапии CAR-T, одобренной ЕС, мы провели оценку нынешнего положения дел в целом. 30 Страны, в которых одобрение ЕС действительно, плюс Соединенное Королевство, рассмат

Reimbursement of licensed cell and gene therapies across the major European healthcare markets.

ObjectiveThe aim of this research is to identify the pricing, reimbursement, and market access (P&R&MA) considerations most relevant to advanced therapy medicinal products (ATMPs) in the Big5EU, and to inform their manufacturers about the key drivers for securing adoption at a commercially viable reimbursed price.MethodologyThe research was structured following three main steps: 1) Identifying the market access pathways relevant to ATMPs through secondary research; 2) Validating the secondary research findings and addressing any data gaps in primary research, by qualitative interviews with nat

Global, Regional, and National Cancer Incidence, Mortality, Years of Life Lost, Years Lived With Disability, and Disability-Adjusted Life-Years for 29 Cancer Groups, 1990 to 2017: A Systematic Analysis for the Global Burden of Disease Study.

IMPORTANCE: Cancer and other noncommunicable diseases (NCDs) are now widely recognized as a threat to global development. The latest United Nations high-level meeting on NCDs reaffirmed this observation and also highlighted the slow progress in meeting the 2011 Political Declaration on the Prevention and Control of Noncommunicable Diseases and the third Sustainable Development Goal. Lack of situational analyses, priority setting, and budgeting have been identified as major obstacles in achieving these goals. All of these have in common that they require information on the local cancer epidemio

Effect of electronic patient record use on mortality in End Stage Renal Disease, a model chronic disease: retrospective analysis of 9 years of prospectively collected data.

BackgroundIn chronic disease, health information technology promises but has yet to demonstrate improved outcomes and decreased costs. The main aim of the study was to determine the effects on mortality and cost of an electronic patient record used in daily patient care in a model chronic disease, End Stage Renal Disease, treated by chronic maintenance hemodialysis. Dialysis treatment is highly regulated, and near uniform in treatment modalities and drugs used.MethodsThe particular electronic patient record, patient-centered and extensively coded, was used first in patient care in 3 dialysis u

2022 International Cancer Education Conference Late-Breaking Abstracts

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TrkA abundance is increased in cutaneous nerves in bortezomib-induced neuropathy.

Tropomyosin receptor kinase A (TrkA), a high-affinity receptor for nerve growth factor (NGF), is implicated in nociception and local angiogenesis. We investigated TrkA localization and abundance in skin biopsies from multiple myeloma patients who developed peripheral neuropathy during bortezomib treatment. We recruited 50 multiple myeloma patients with bortezomib-induced peripheral neuropathy (BIPN), including 31 without pain and 19 with pain, and 27 matched healthy controls at University Hospital Würzburg (2021-2024). Skin biopsies from the distal leg were analyzed to determine intraepidermal

Barriers to Recruitment and Retention Among Underrepresented Populations in Cancer Clinical Trials: A Qualitative Study of the Perspectives of Clinical Trial Research Coordinating Staff at a Cancer Center.

BackgroundAlthough US research agencies have instituted peer review processes to require participant diversity in clinical trials before funding decisions are made, the underrepresentation of certain populations (eg, racial and ethnic minorities) in clinical trials remains a persistent challenge in biomedical research. This issue has the potential to affect the generalizability of findings and impede efforts to ensure the provision of high-quality healthcare across all populations. In this study, we examined barriers to the recruitment and retention of underrepresented populations in cancer cl

Update Breast Cancer 2019 Part 5 - Diagnostic and Therapeutic Challenges of New, Personalised Therapies in Patients with Advanced Breast Cancer.

Significant advancements have been made in recent years in advanced breast cancer and nearly all of them have been in the field of targeted therapy. Pertuzumab and trastuzumab-emtansine (T-DM1) have been able to be introduced in HER2-positive breast cancer. Now other anti-HER2 therapies are being developed (e.g. margetuximab, DS-8201a, pyrotinib) which can overcome other resistance mechanisms in the HER2 signalling pathway. In the field of hormone-receptor-positive breast cancer, an mTOR inhibitor and CDK4/6 inhibitors were introduced in the past. Now the introduction of the first PI3K inhibit

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… In the case of the digitalisation in healthcare as required by the German federal government, it is foreseeable that data on issues relating to healthcare and the factors which influence its quality can be expected soon 46 . …

Disability-Adjusted Life Years for Cancer in 2010⁻2014: A Regional Approach in Mexico.

The disability-adjusted life years (DALYs) were used to estimate the regional (state of Colima, Mexico) cancer burden in 2010⁻2014. The years of life lost (YLL) were estimated with mortality data and years lived with disability (YLD) using incidence data. The DALYs were calculated as the arithmetic addition of YLL and YLD. Sex and cancer site-specific estimations were made and DALY rates were used to identify the leading causes of disease burden. Data from 2532 deaths were analyzed and, for all malignant tumors combined, 18,712.9 DALYs and 20,243.3 DALYs were estimated in males and females res

Preclinical efficacy of tasquinimod in myelodysplastic neoplasms: Restoring erythropoiesis and mitigating bone loss.

Myelodysplastic neoplasms (MDSs) are clonal disorders characterized by ineffective hematopoiesis, dysplasia, and a risk of transformation into acute myeloid leukemia. MDS is also associated with a higher incidence of osteoporosis, suggesting a complex interplay between hematopoiesis, the bone marrow (BM) microenvironment, and bone homeostasis. Targeting inflammation has emerged as a promising therapeutic strategy, particularly in lower risk MDS. Tasquinimod (TASQ) is a small-molecule inhibitor of the inflammatory alarmin S100A9, blocking its interaction with TLR4 and RAGE receptors. We investi

Частота и распространенность множественных склерозов в Венгрии на основе рекордной увязки общенациональных многочисленных административных данных в области здравоохранения.

ЦЕЛИ: Поскольку в Венгрии проводились лишь региональные исследования по вопросу о распространенности множественного склероза (МС), мы стремились оценить его эпидемиологические особенности с использованием данных венгерской системы медицинского страхования с одним плательщиком. МЕТОДЫ: Псевудонимная база данных о жалобах, представленных больницами и амбулаторными службами в период между 2004-2016 был проанализирован и увязан с независимой базой данных о заправке амбулаторными аптеками 2010-2016. Мы установили административное определение MS и подтвердили его на медицинских записях 309 Последова

Global, regional, and national comparative risk assessment of 84 behavioural, environmental and occupational, and metabolic risks or clusters of risks for 195 countries and territories, 1990-2017: a systematic analysis for the Global Burden of Disease Study 2017.

BACKGROUND: The Global Burden of Diseases, Injuries, and Risk Factors Study (GBD) 2017 comparative risk assessment (CRA) is a comprehensive approach to risk factor quantification that offers a useful tool for synthesising evidence on risks and risk-outcome associations. With each annual GBD study, we update the GBD CRA to incorporate improved methods, new risks and risk-outcome pairs, and new data on risk exposure levels and risk-outcome associations. METHODS: We used the CRA framework developed for previous iterations of GBD to estimate levels and trends in exposure, attributable deaths, and

Повышение роли пациентов в научном написании: понимание на основе глобального подхода с участием людей с множественным склерозом.

ВВЕДЕНИЕ: Цель настоящего исследования заключается в том, чтобы охарактеризовать процесс участия путем изучения представлений и ожиданий людей с множественным склерозом (СМЖП) в отношении процесса научного написания (ЗП) и роли участия и качества жизни пациентов в оказании на них влияния. МЕТОДЫ: На основе модели MULTI-ACT было проведено двухэтапное многометодическое исследование. Было организовано четыре семинара-практикума по совместному созданию, и их результаты были использованы для подготовки обследования, которое было переведено на восемь языков и распространено на международном уровне с

The 4th Global Congress on Sickle Cell Disease Abstract Book 2022

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