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Strategies to motivate participants, caregivers, stakeholders, governmental and administrative bodies as well as the research community are instrumental to successful registry outcomes.
In order to facilitate oncologist communication about the likelihoods of treatment outcomes, researchers have created prognostic models based on registry outcomes data and evidence from clinical trials.
Instead, we encourage development of a database of registry, outcomes, and cost information as a reliable resource for supporting performance-based payment, public recognition, and professional improvement efforts.
Randomised trials have shown the 2-year mortality following TAVI to be superior to standard medical therapy and non-inferior to SAVR, 7 10 with good registry outcomes at 5 years.
National joint registry outcomes are more likely to represent clinical practice in the community and less subject to the selection bias and referral bias that might influence outcomes in studies from single centers or academic institutions.
Our findings are consistent with those recently reported by the Fibroid Registry Outcomes for Outcomes Data (FIBROID), a registry study of over 2,000 patients undergoing uterine embolization for leiomyomata [ 15].
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Despite the availability of various clinical grade separation devices for graft manipulation, and theoretical concepts supporting the use of T- or B-cell depletion, none of the EBMT registry outcome analyses to date support ex vivo depletion strategies.
A main focus during this phase was providing IT-solutions for easy and open access to the registries' outcome data.
However, although in most countries (Denmark, Italy, The Netherlands, Norway, Spain, Sweden, and the UK), cancer cases were identified through linkage with population-based cancer registries, outcome misclassification cannot be ruled out in countries using other methods to identify cancer cases.
Several recent cohort analyses were published from Norway [ 2], Denmark [ 21], and Italy [ 22] using a record linkage design with information on screening invitations or participations from program registries, and outcomes from cancer registries.
Similarly, data from the European BIOMED Study of Stroke Care Group and the Safe Implementation of Thrombolysis in Stroke-Monitoring Study (SITS-MOST) registry reported outcomes from patients with AIS aged >80 years, and documented higher mortality and worse functional outcomes.
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