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Preprint in English | medRxiv | ID: ppmedrxiv-20204578


ObjectiveTo evaluate if the number of admitted extremely preterm (EP) infants (born before 28 weeks of gestational age) has changed in the neonatal intensive care units (NICUs) of the SafeBoosC-III consortium during the global lockdown when compared to the corresponding time period in 2019. DesignThis is a retrospective, observational study. Forty-six out of 79 NICUs (58%) from 17 countries participated. Principal investigators were asked to report the following information: 1) Total number of EP infant admissions to their NICU in the three months where the lockdown restrictions were most rigorous during the first phase of the COVID-19 pandemic, 2) Similar EP infant admissions in the corresponding three months of 2019, 3) the level of local restrictions during the lockdown period and 4) the local impact of the COVID-19 lockdown on the everyday life of a pregnant woman. ResultsThere was no significant difference between the number of EP infant admissions during the three most rigorous lockdown months of the COVID-19 pandemic compared to the corresponding three months in 2019 (n=428 versus n=457 respectively, p=0.33). There were no significant changes within individual geographic regions and no significant association between the level of lockdown restrictions and change in the number of EP infant admissions (p=0.334). ConclusionThis larger ad hoc study did not confirm previous studies report of a major reduction in the number of extremely preterm births during the first phase of the COVID-19 pandemic.

J Inherit Metab Dis ; 35(6): 1037-49, 2012 Nov.
Article in English | MEDLINE | ID: mdl-22450714


Without intervention, classic galactosemia is a potentially fatal disorder in infancy. With the benefit of early diagnosis and dietary restriction of galactose, the acute sequelae of classic galactosemia can be prevented or reversed. However, despite early and lifelong dietary treatment, many galactosemic patients go on to experience serious long-term complications including cognitive disability, speech problems, neurological and/or movement disorders and, in girls and women, ovarian dysfunction. Further, there remains uncertainty surrounding what constitutes a 'best practice' for treating this disorder. To explore the extent and implications of this uncertainty, we conducted a small but global survey of healthcare providers who follow patients with classic galactosemia, seeking to compare established protocols for diagnosis, intervention, and follow-up, as well as the outcomes and outcome frequencies seen in the patient populations cared for by these providers. We received 13 survey responses representing five continents and 11 countries. Respondents underscored disparities in approaches to diagnosis, management and follow-up care. Notably, we saw no clear relationship between differing approaches to care and long-term outcomes in the populations studied. Negative outcomes occurred in the majority of cases regardless of when treatment was initiated, how tightly galactose intake was restricted, or how closely patients were monitored. We document here what is, to our knowledge, the first global comparison of healthcare approaches to classic galactosemia. These data reinforce the idea that there is currently no one best practice for treating patients with classic galactosemia, and underscore the need for more extensive and statistically powerful comparative studies to reveal potential positive or negative impacts of differing approaches.

Galactosemias/diet therapy , Galactosemias/diagnosis , Adolescent , Adult , Child , Cognition Disorders/etiology , Dietary Carbohydrates/administration & dosage , Female , Galactose/administration & dosage , Galactosemias/complications , Humans , Infant , Infant, Newborn , Internationality , Male , Neonatal Screening , Ovarian Diseases/etiology , Surveys and Questionnaires , Treatment Outcome