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Improving Recruitment for a Newborn Screening Pilot Study with Adaptations in Response to the COVID-19 Pandemic
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In: International Journal of Neonatal Screening; Volume 8; Issue 2; Pages: 23 (2022)
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Abstract:
Seven months after the launch of a pilot study to screen newborns for Duchenne Muscular Dystrophy (DMD) in New York State, New York City became an epicenter of the coronavirus disease 2019 (COVID-19) pandemic. All in-person research activities were suspended at the study enrollment institutions of Northwell Health and NewYork-Presbyterian Hospitals, and study recruitment was transitioned to 100% remote. Pre-pandemic, all recruitment was in-person with research staff visiting the postpartum patients 1–2 days after delivery to obtain consent. With the onset of pandemic, the multilingual research staff shifted to calling new mothers while they were in the hospital or shortly after discharge, and consent was collected via emailed e-consent links. With return of study staff to the hospitals, a hybrid approach was implemented with in-person recruitment for babies delivered during the weekdays and remote recruitment for babies delivered on weekends and holidays, a cohort not recruited pre-pandemic. There was a drop in the proportion of eligible babies enrolled with the transition to fully remote recruitment from 64% to 38%. In addition, the proportion of babies enrolled after being approached dropped from 91% to 55%. With hybrid recruitment, the proportion of eligible babies enrolled (70%) and approached babies enrolled (84%) returned to pre-pandemic levels. Our experience adapting our study during the COVID-19 pandemic led us to develop new recruitment strategies that we continue to utilize. The lessons learned from this pilot study can serve to help other research studies adapt novel and effective recruitment methods.
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Keyword:
COVID-19 pandemic; Duchenne Muscular Dystrophy; newborn screening
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URL: https://doi.org/10.3390/ijns8020023
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Prevalence of ankyloglossia and factors that impact on exclusive breastfeeding in neonates
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In: Revista CEFAC, Vol 24, Iss 1 (2022) (2022)
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Neurodevelopmental outcomes among extremely premature infants with linear growth restriction.
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Detección precoz de la hipoacusia, influencia en el diagnóstico y en el tratamiento temprano
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Deficient neural encoding of speech sounds in term neonates born after fetal growth restriction
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Universal neonatal hearing screening program at a university hospital: an analysis using quality indicators
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In: Revista CEFAC, Vol 23, Iss 4 (2021) (2021)
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Long-term persistence of monotypic dengue transmission in small size isolated populations, French Polynesia, 1978-2014
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In: ISSN: 1935-2727 ; EISSN: 1935-2735 ; PLoS Neglected Tropical Diseases ; https://hal.archives-ouvertes.fr/hal-02747286 ; PLoS Neglected Tropical Diseases, Public Library of Science, 2020, 14 (3), pp.e0008110. ⟨10.1371/journal.pntd.0008110⟩ (2020)
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Adjacent and Non-Adjacent Word Contexts Both Predict Age of Acquisition of English Words: A Distributional Corpus Analysis of Child-Directed Speech.
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In: Cognitive science, vol 44, iss 11 (2020)
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Defining and distinguishing infant behavioral states using acoustic cry analysis: is colic painful?
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In: Pediatric research, vol 87, iss 3 (2020)
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A multi-level developmental approach to exploring individual differences in Down syndrome: genes, brain, behaviour, and environment. ...
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Utilization of Genetics Services in the Diagnosis of Hearing Loss in Newborns in the State of Ohio
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In: http://rave.ohiolink.edu/etdc/view?acc_num=osu1587487734460476 (2020)
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Performance of the German version of the PARCA-R questionnaire as a developmental screening tool in two-year-old very preterm infants
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In: ISSN: 1932-6203 ; PLOS ONE, Vol. 15, No 9 (2020) P. e0236289 (2020)
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A multi-level developmental approach to exploring individual differences in Down syndrome: genes, brain, behaviour, and environment.
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Status of early hearing detection and intervention programs in Canada: Results from a country-wide survey
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In: Communication Sciences and Disorders Publications (2020)
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Breastfeeding rate and speech-language therapy in the Kangaroo Method
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In: Revista CEFAC, Vol 21, Iss 5 (2020) (2020)
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Territorial distribution and quality indicators of compulsory Neonatal Hearing Screening in Brazil after Law 12,303/2010
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In: Revista CEFAC, Vol 22, Iss 4 (2020) (2020)
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Speech-language-hearing follow-up of preterm children: feeding and neuropsychomotor performance
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In: Revista CEFAC, Vol 22, Iss 4 (2020) (2020)
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Ankyloglossia and breastfeeding: what is the evidence of association between them?
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In: Revista CEFAC, Vol 22, Iss 3 (2020) (2020)
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Neurodevelopmental outcomes among extremely premature infants with linear growth restriction.
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In: Journal of perinatology : official journal of the California Perinatal Association, vol 39, iss 2 (2019)
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Pathogenic variants in USP7 cause a neurodevelopmental disorder with speech delays, altered behavior, and neurologic anomalies.
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In: Genetics in medicine : official journal of the American College of Medical Genetics, vol 21, iss 8 (2019)
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