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Improving Recruitment for a Newborn Screening Pilot Study with Adaptations in Response to the COVID-19 Pandemic

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 N...

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Autores principales: Wynn, Julia, Tavakoli, Norma P., Armstrong, Niki, Gomez, Jacqueline, Koval, Carrie, Lai, Christina, Tang, Stephanie, Quevedo Prince, Andrea, Quevedo, Yeyson, Rufino, Katrina, Palacio Morales, Laura, Pena, Angela, Grossman, Sharon, Monfiletto, Mary, Ruda, Erika, Jimenez, Vania, Verdade, Lorraine, Jones, Ashley, Barriga, Michelle G., Karan, Nandanee, Puma, Alexandria, Sarker, Safa, Chin, Sarah, Duarte, Kelly, Tegay, David H., Bacchus, Irzaud, Julooru, Rajani, Maloney, Breanne, Park, Sunju, Saami, Akilan M., Cohen, Lilian, Shapiro, Natasha, Caggana, Michele, Chung, Wendy K., Gruber, Dorota
Formato: Online Artículo Texto
Lenguaje:English
Publicado: MDPI 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9036248/
https://www.ncbi.nlm.nih.gov/pubmed/35466194
http://dx.doi.org/10.3390/ijns8020023
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author Wynn, Julia
Tavakoli, Norma P.
Armstrong, Niki
Gomez, Jacqueline
Koval, Carrie
Lai, Christina
Tang, Stephanie
Quevedo Prince, Andrea
Quevedo, Yeyson
Rufino, Katrina
Palacio Morales, Laura
Pena, Angela
Grossman, Sharon
Monfiletto, Mary
Ruda, Erika
Jimenez, Vania
Verdade, Lorraine
Jones, Ashley
Barriga, Michelle G.
Karan, Nandanee
Puma, Alexandria
Sarker, Safa
Chin, Sarah
Duarte, Kelly
Tegay, David H.
Bacchus, Irzaud
Julooru, Rajani
Maloney, Breanne
Park, Sunju
Saami, Akilan M.
Cohen, Lilian
Shapiro, Natasha
Caggana, Michele
Chung, Wendy K.
Gruber, Dorota
author_facet Wynn, Julia
Tavakoli, Norma P.
Armstrong, Niki
Gomez, Jacqueline
Koval, Carrie
Lai, Christina
Tang, Stephanie
Quevedo Prince, Andrea
Quevedo, Yeyson
Rufino, Katrina
Palacio Morales, Laura
Pena, Angela
Grossman, Sharon
Monfiletto, Mary
Ruda, Erika
Jimenez, Vania
Verdade, Lorraine
Jones, Ashley
Barriga, Michelle G.
Karan, Nandanee
Puma, Alexandria
Sarker, Safa
Chin, Sarah
Duarte, Kelly
Tegay, David H.
Bacchus, Irzaud
Julooru, Rajani
Maloney, Breanne
Park, Sunju
Saami, Akilan M.
Cohen, Lilian
Shapiro, Natasha
Caggana, Michele
Chung, Wendy K.
Gruber, Dorota
author_sort Wynn, Julia
collection PubMed
description 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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spelling pubmed-90362482022-04-26 Improving Recruitment for a Newborn Screening Pilot Study with Adaptations in Response to the COVID-19 Pandemic Wynn, Julia Tavakoli, Norma P. Armstrong, Niki Gomez, Jacqueline Koval, Carrie Lai, Christina Tang, Stephanie Quevedo Prince, Andrea Quevedo, Yeyson Rufino, Katrina Palacio Morales, Laura Pena, Angela Grossman, Sharon Monfiletto, Mary Ruda, Erika Jimenez, Vania Verdade, Lorraine Jones, Ashley Barriga, Michelle G. Karan, Nandanee Puma, Alexandria Sarker, Safa Chin, Sarah Duarte, Kelly Tegay, David H. Bacchus, Irzaud Julooru, Rajani Maloney, Breanne Park, Sunju Saami, Akilan M. Cohen, Lilian Shapiro, Natasha Caggana, Michele Chung, Wendy K. Gruber, Dorota Int J Neonatal Screen Article 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. MDPI 2022-03-22 /pmc/articles/PMC9036248/ /pubmed/35466194 http://dx.doi.org/10.3390/ijns8020023 Text en © 2022 by the authors. https://creativecommons.org/licenses/by/4.0/Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/).
spellingShingle Article
Wynn, Julia
Tavakoli, Norma P.
Armstrong, Niki
Gomez, Jacqueline
Koval, Carrie
Lai, Christina
Tang, Stephanie
Quevedo Prince, Andrea
Quevedo, Yeyson
Rufino, Katrina
Palacio Morales, Laura
Pena, Angela
Grossman, Sharon
Monfiletto, Mary
Ruda, Erika
Jimenez, Vania
Verdade, Lorraine
Jones, Ashley
Barriga, Michelle G.
Karan, Nandanee
Puma, Alexandria
Sarker, Safa
Chin, Sarah
Duarte, Kelly
Tegay, David H.
Bacchus, Irzaud
Julooru, Rajani
Maloney, Breanne
Park, Sunju
Saami, Akilan M.
Cohen, Lilian
Shapiro, Natasha
Caggana, Michele
Chung, Wendy K.
Gruber, Dorota
Improving Recruitment for a Newborn Screening Pilot Study with Adaptations in Response to the COVID-19 Pandemic
title Improving Recruitment for a Newborn Screening Pilot Study with Adaptations in Response to the COVID-19 Pandemic
title_full Improving Recruitment for a Newborn Screening Pilot Study with Adaptations in Response to the COVID-19 Pandemic
title_fullStr Improving Recruitment for a Newborn Screening Pilot Study with Adaptations in Response to the COVID-19 Pandemic
title_full_unstemmed Improving Recruitment for a Newborn Screening Pilot Study with Adaptations in Response to the COVID-19 Pandemic
title_short Improving Recruitment for a Newborn Screening Pilot Study with Adaptations in Response to the COVID-19 Pandemic
title_sort improving recruitment for a newborn screening pilot study with adaptations in response to the covid-19 pandemic
topic Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9036248/
https://www.ncbi.nlm.nih.gov/pubmed/35466194
http://dx.doi.org/10.3390/ijns8020023
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