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The coronavirus disease 2019 (COVID-19) pandemic has had unprecedented impact on the provision of medical care for genetic disorders. The purpose of this study was to assess the effects of the pandemic on neurofibromatosis (NF) care and research. Sixty-three United States NF clinics were surveyed to identify the impact of the pandemic on clinician role, patient volume, continuity of guideline-driven surveillance, research protocols, and use of (and satisfaction with) telehealth for the delivery of NF care. Fifty-two clinic directors or their representatives completed the survey (83% response rate). About 2/3 of the clinics reported a greater than 50% decrease in the number of available patient appointments, and modified clinical surveillance and research protocols. Fifty-one clinics (98%) newly instituted telehealth during the pandemic. Barriers to telehealth prior to the pandemic were insurance reimbursement concerns and lack of infrastructure. Since telehealth was initiated, high provider satisfaction was reported with ease of use. The most common area of concern was related to inability to perform a physical examination. Results show marked impacts on NF care and research since the beginning of the pandemic, with potential long-term changes related to the introduction (or adoption) of telehealth for clinical care. Results show marked impacts on NF care and research since the beginning of the pandemic, with potential long-term changes related to the introduction (or adoption) of telehealth for clinical care. The success of the Sustainable Development Goals (SDGs) is predicated on multisectoral collaboration (MSC), and the COVID-19 pandemic makes it more urgent to learn how this can be done better. Complex challenges facing countries, such as COVID-19, cut across health, education, environment, financial and other sectors. Addressing these challenges requires the range of responsible sectors and intersecting services - across health, education, social and financial protection, economic development, law enforcement, among others - transform the way they work together towards shared goals. While the necessity of MSC is recognized, research is needed to understand how sectors collaborate, inform how to do so more efficiently, effectively and equitably, and ascertain similarities and differences across contexts. To answer these questions and inform practice, research to strengthen the evidence-base on MSC is critical. This paper draws on a 12-country study series on MSC for health and sustainable development, in tSC is an urgent priority. It enables partners from diverse sectors to effectively convene to do more together than alone. https://www.selleckchem.com/products/lxs-196.html Our findings have practical relevance for achieving this objective and contribute to the growing literature on partnerships and collaboration. We must seize the opportunity here to identify remaining knowledge gaps on how diverse sectors can work together efficiently and effectively in different settings to accelerate progress towards achieving shared goals. In responding to COVID-19 it is evident that effective MSC is an urgent priority. It enables partners from diverse sectors to effectively convene to do more together than alone. Our findings have practical relevance for achieving this objective and contribute to the growing literature on partnerships and collaboration. We must seize the opportunity here to identify remaining knowledge gaps on how diverse sectors can work together efficiently and effectively in different settings to accelerate progress towards achieving shared goals.The aim of this letter to the editor is to provide a comprehensive summary of uncertainty assessment in Health Technology Assessment, with a focus on transferability to the setting of rare diseases. The authors of "TRUST4RD tool for reducing uncertainties in the evidence generation for specialised treatments for rare diseases" presented recommendations for reducing uncertainty in rare diseases. Their article is of great importance but unfortunately suffers from a lack of references to the wider uncertainty in Health Technology Assessment and research prioritisation literature and consequently fails to provide a trusted framework for decision-making in rare diseases. In this letter to the editor we critique the authors' tool and provide pointers as to how their proposal can be strengthened. We present references to the literature, including our own tool for uncertainty assessment (TRUST; unrelated to the authors' research), apply TRUST to two assessments of orphan drugs in rare diseases and provide a broader perspective on uncertainty and risk management in rare diseases, including a detailed research agenda. Ethiopia is one of the nations which has an enormous burden of intimate partner violence (IPV), and where it is usually difficult to talk about HIV separately from IPV. This research aimed to explore the lived experience of IPV against women using antiretroviral therapy (ART) and other outpatient services in Wolaita Zone, Ethiopia METHODS We used an Interpretive (hermeneutic) Phenomenological Analysis design among purposively selected adult women aged 18-49years. A total of 43 women participated in this study, of whom 30 were using ART, and 13 women were using other health services. We used an in-depth interview and focus group discussions until data saturation, while conscious of the need to maintain the scientific rigor, dependability, and credibility. The data were transcribed verbatim and translated into English. We read the transcripts repeatedly to understand the content. We used NVivo 11 software to assist with data organisation, and also, we used the framework analysis method. We identified fivesentation and its negative impact on women's health. Improved laws should provide justice for all victims. Establishing a women's network to assist women at risk of violence, should be emphasised. Unwise HIV test result disclosure leads to IPV; hence HIV disclosure should be facilitated through health care providers. IPV is a considerable health burden, varying in its presentation and its negative impact on women's health. Improved laws should provide justice for all victims. Establishing a women's network to assist women at risk of violence, should be emphasised. Unwise HIV test result disclosure leads to IPV; hence HIV disclosure should be facilitated through health care providers.
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