Mark Skinner
@MSkinnerDC
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Contrasting Approaches in the Implementation of GRADE Methodology in Guidelines for Haemophilia and VWD. This article developed by a global team of 48 experts and international organizations rigorously examines a number of GRADE methodology adaptations.
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RT @Brianhemophilia: Process flawed with methodologist and non haemophilia treaters in lead roles. Patients initially involved all withdre…
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RT @Brianhemophilia: Conclusions: Methodological approach used resulted in categorisation of evidence as weak. Failure to recognise the adv…
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RT @Brianhemophilia: A critique of the ISTH Haemophilia Guidelines was published in #Haemophilia Journal today with 49 eminent authors repr…
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RT @wfhemophilia: The WFH supports the findings of 49 global experts that examined the ISTH Guidelines & published a critical appraisal in…
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RT @wfhemophilia: The WFH is aligned with the findings of 48 global experts within the #BleedingDisorder community, that have come together…
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The methodology should have allowed data from registries and real-world studies, integrated multiple patient-related outcomes and expert opinion. The strict application led ISTH to limited, conservative, and unambitious guidelines failing to consider newer treatments.
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@Brianhemophilia Shared decision making should be at the core of making an appropriate decision reflecting individual patients preferences, goals, and values. Stay tuned for the soon to be released @WFH shared decision making took
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RT @Brianhemophilia: In the paper, we review the data leading to the regulatory authorization in Europe of valoctocogene roxaparvovec, an a…
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RT @Brianhemophilia: Paper just published online. The decision to take a gene therapy product is one in which an informed, holistic and sha…
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The Aging with a bleeding disorder panel at #WFHCCS presented many new challenges. A specialist multidisciplinary team is needed to ensure all individuals receive appropriate individualized care. @WillMcKeown Felipe Contreras, Sue Cutter, Piet de Klein @lochibabes @NiamhLarkinANP
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Pleased to report Initial Results of the Impact of Valoctocogene Roxaparvovec on Pain Occurrence and Interference: Insights from PROBE at #wfhCCS. Chronic pain is a core patient-important outcome.
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RT @Brianhemophilia: Recommendations for future of ageing PWH: recognise variation, impact on all genders, changed time horizons lead to ne…
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RT @Brianhemophilia: Australian PROBE data shows impact of haemophilia on employment. In PWH 45-64 years, 50% in fulltime employment v over…
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@Brianhemophilia Thank you to @Haemophilia_Au for this important work highlighting the impact of hemophilia on aging. The lessons from Australia Haemophilia Foundation are relevant globally.
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RT @Brianhemophilia: Australian PROBE data shows continued impairment in men with haemophilia in physical functioning and levels of pain co…
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The profound effect of past tragedy and unexpected longevity, although often unspoken or discussed with our care teams, needs to be recognized and understood by patients, families and health care professionals alike if we are to achieve optimal care as we age with hemophilia.
In a US study, 88% PWH reported being profoundly affected by their unexpected longevity. Many did not plan for the future, expecting to have a short life span. Probably linked to the appalling tragedy of HIV and Hepatitis C in the community @MSkinnerDC @wfhemophilia #wfhCCS
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RT @Brianhemophilia: @MSkinnerDC outlines key members of the comp care team and points out increased need for expertise of Cardiologists,…
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Aging with a bleeding disorder is emerging as important topic for care delivery and our integrated care teams. Our needs change as we age, the HTC team should evolve too.
First day of @wfhemophilia Comprehensive Care Summit. Great to see @WillMcKeown speaking on ageing. #wfhCCS
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