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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...
Autores principales: | , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
MDPI
2022
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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. |
format | Online Article Text |
id | pubmed-9036248 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2022 |
publisher | MDPI |
record_format | MEDLINE/PubMed |
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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