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To improve registry enrollment, we transitioned to an online registry and trial matching mechanism to aid women in accessing open studies.
The PKUDOS population consists of 1189 subjects with PKU: N = 504 who were continuously exposed to sapropterin from date of registry enrollment, N = 211 who had intermittent exposure to the drug, and N = 474 with some other duration of exposure.
To compare registry and electronic health record (EHR) data mining approaches for cohort ascertainment in patients with pediatric pulmonary hypertension (PH) in an effort to overcome some of the limitations of registry enrollment alone in identifying patients with particular disease phenotypes.
We used Cox proportional hazards models to examine relationships between registry enrollment and outcomes, controlling for baseline characteristics.
Prevalent digoxin use at registry enrollment was not associated with subsequent onset of symptoms, hospitalization, or mortality (in patients with HF, adjusted hazard ratio [HR] for death: 1.04; without HF, HR: 1.22).
Patients signed an informed consent at registry enrollment.
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For the purposes of this paper, as well as the overall Registry study, enrollment signifies the informed consent of the pregnant women for data collection and analysis of her pre and postnatal data.
Eligibility criteria for inclusion in the analyses included age <20 years, diabetes duration ≥1 year, the availability of a current clinical assessment of renal status, and a urinary albumin-to-creatinine ratio (ACR) result within the prior 2 years, all based on data collected for the registry at enrollment.
Fourth, data were collected in the framework of a population-based registry with consecutive enrollment.
Although the TREAT registry is ongoing, patient enrollment into the TREAT registry is complete, and all enrolled patients have been followed for at least 5 years.
Among 349,999 US patients with AF from 179 cardiovascular practices in the PINNACLE registry, 197,255 (56.4%) met enrollment criteria for LEGACY.
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