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The COVID-19 Pandemic: The Impact on Newborn Screening Research, Clinical...
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The COVID-19 Pandemic: The Impact on Newborn Screening Research, Clinical Care and Public Health

A special issue of International Journal of Neonatal Screening (ISSN 2409-515X).

Deadline for manuscript submissions: closed (30 September 2022) | Viewed by 25202

Special Issue Editors

Dr. Michele A. Lloyd-Puryear

E-Mail Website1 Website2
Guest Editor
Retired, Eunice Kennedy Shriver National Institute of Child Health and Human Development (Former Senior Medical and Scientific Advisor), National Institutes of Health, Bethesda, MD, USA
Interests: pediatrics; genetic services; newborn screening services and research; public health; information systems infrastructure
Special Issues, Collections and Topics in MDPI journals
Dr. Amy Brower

E-Mail Website
Guest Editor
1. University of Nebraska Medical Center (UNMC), Omaha, NE 68198, USA
2. Department of Health Professions, Creighton University School of Medicine, Omaha, NE 68178, USA
Interests: neonatal screening; genomics; public health; advocacy; diversity; equity; inclusion and justice (DEIJ); pediatric cancer; health outcomes; rare disease
Special Issues, Collections and Topics in MDPI journals
Dr. Amy Gaviglio

E-Mail Website
Guest Editor
G2S Corporation, Newborn Screening and Molecular Biology Branch, Division of Laboratory Sciences, National Center for Environmental Health, Centers for Disease Control and Prevention, Washington, DC, USA
Consultant for the Association of Public Health Laboratories, ‎Silver Spring, MD 20910, USA
Interests: newborn screening services; rare disease; genetic counseling; ethics; informatics
Special Issues, Collections and Topics in MDPI journals
Dr. Susan A. Berry

E-Mail Website
Guest Editor
Department of Pediatrics, University of Minnesota, Minneapolis, MN, USA
Interests: newborn screening research and clinical care; rare disease; precision medicine; longitudinal follow-up; public policy

Special Issue Information

Dear Colleagues, 

Newborn screening, while based upon analytical and physiological tests performed on newborns, also includes a broader system of services that impacts both infants and their families. The system of services involves the public health and health care delivery systems, clinicians and researchers and many nongovernmental entities. The COVID-19 pandemic has both pushed and offered new opportunities for the Newborn Screening system.  For example, the COVID-19 global pandemic has challenged researchers, clinicians, and public health teams everywhere to rethink how day-to-day newborn screening as well as newborn screening research is conducted and what infrastructure needs to be in place to both ensure ongoing delivery of screening services and advance discoveries while engaging researchers and research participants. Precautions against spreading the coronavirus, including physical distancing, and working from home, have transformed the work of public health, clinical, and academic research teams across the country in all research and clinical domains. COVID-19 testing is often performed within the same agency as the laboratory component of NBS and there have been documented shortages of supplies, equipment and personnel.

This Special Issue will be devoted to how the Newborn Screening Community has deployed innovative approaches to continue research and discovery, clinical implementation, and public health practice, including service delivery, during a global pandemic.  Some topics of interest include:

  • health inequities within newborn screening programs–an old Concern that may be getting worse
  • COVID implications and fetal medicine–implications for newborn screening programs
  • using remote technologies and telehealth in the newborn screening system during a pandemic
  • modification of continuity of operations plans during a pandemic
  • ethical and policy issues for carrier screening–implications for newborn screening programs
  • conducting newborn screening pilots during a pandemic
  • using a consortium to structure and conduct a pilot, including policy issues to consider
  • screening for X-linked disorders
  • emerging models of data collection and sharing due to COVID-19 vaccination
  • research and drug development funding and prioritization During a pandemic

This special issue will be helpful to many programmes reviewing their response to the epidemic and putting policies and procedures in place for dealing with the next one. To facilitate this and enable comparisons between country or state program responses, please ensure that the following information is included in your introduction:

  • geographic area covered
  • number of births screened annually
  • physical location of the newborn screening laboratory (stand-alone, in-public health laboratory, in-hospital laboratory) i.e., how procedures were impacted by a general laboratory decision rather than a specific newborn screening decision.
  • summary [brief] of covid status over time in the geographic area
  • description of newborn screening pilots of candidate conditions during a pandemic
  • summary [brief] of government responses to covid status over time

And whatever the focus of your paper, if all aspects of the screening pathway aren’t covered, please briefly mention them i.e., specimen collection, transport, lab testing, follow-up, and diagnosis.

Dr. Michele A. Lloyd-Puryear
Dr. Amy Brower
Dr. Amy Gaviglio
Dr. Susan A. Berry
Guest Editors

Manuscript Submission Information

Manuscripts should be submitted online at www.mdpi.com by registering and logging in to this website. Once you are registered, click here to go to the submission form. Manuscripts can be submitted until the deadline. All submissions that pass pre-check are peer-reviewed. Accepted papers will be published continuously in the journal (as soon as accepted) and will be listed together on the special issue website. Research articles, review articles as well as short communications are invited. For planned papers, a title and short abstract (about 100 words) can be sent to the Editorial Office for announcement on this website.

Submitted manuscripts should not have been published previously, nor be under consideration for publication elsewhere (except conference proceedings papers). All manuscripts are thoroughly refereed through a single-blind peer-review process. A guide for authors and other relevant information for submission of manuscripts is available on the Instructions for Authors page. International Journal of Neonatal Screening is an international peer-reviewed open access quarterly journal published by MDPI.

Please visit the Instructions for Authors page before submitting a manuscript. The Article Processing Charge (APC) for publication in this open access journal is 1600 CHF (Swiss Francs). Submitted papers should be well formatted and use good English. Authors may use MDPI's English editing service prior to publication or during author revisions.

Keywords

  • newborn screening
  • COVID-19
  • pandemic
  • carriers and X-linked disorders

Published Papers (8 papers)

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Research

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12 pages, 7503 KiB  
Article
Shadow of a Pandemic: Persistence of Prenatal SARS-CoV-2 Antibodies in Newborn Blood Spots
by Stanley Sciortino, Steve Graham, Toki Fillman, Hari Kandasamy, Robin Cooley, Carl Hanson, Valorie Eckert, Hao Tang, Juan Yang, David Seftel, Cheng-ting Tsai and Peter Robinson
Int. J. Neonatal Screen. 2023, 9(3), 43; https://doi.org/10.3390/ijns9030043 - 02 Aug 2023
Viewed by 1443
Abstract
To investigate COVID-19 surveillance among pregnant women, the California Genetic Disease Screening Program conducted a screening performance and seroprevalence evaluation of maternal SARS-CoV-2 antibodies detected in banked newborn dried blood spots (DBS). We obtained seropositive results for 2890 newborn DBS from cohorts in [...] Read more.
To investigate COVID-19 surveillance among pregnant women, the California Genetic Disease Screening Program conducted a screening performance and seroprevalence evaluation of maternal SARS-CoV-2 antibodies detected in banked newborn dried blood spots (DBS). We obtained seropositive results for 2890 newborn DBS from cohorts in 2020 and 2021 using Enable Bioscience’s Antibody Detection by Agglutination-PCR (ADAP) assay for SARS-CoV-2 antibodies. To infer maternal infection, we linked 312 women with a known laboratory-confirmed COVID-19 episode with their newborn’s DBS SARS-CoV-2 antibody result. Among 2890 newborns, we detected 453 (15.7%) with SARS-CoV-2 antibodies in their DBS. Monthly snapshot statewide seroprevalence among neonates was 12.2% (95% CI 10.3–14.1%, n =1156) in December 2020 and 33.3% (95% CI 29.1–37.4%, n = 26) in March 2021. The longest time recorded from COVID-19 infection to a seropositive neonatal result was 11.7 months among the 312 mothers who had an available SARS-CoV-2 PCR test result. Approximately 94% (153/163) of DBS were seropositive when a known maternal infection occurred earlier than 19 days before birth. The estimated relative sensitivity of DBS to identify prevalent maternal infection was 85.1%, specificity 98.5% and PPV 99.2% (n = 312); the sensitivity was lowest during the December 2021 surge when many infections occurred within 19 days of birth. Fifty pre-pandemic specimens (100% seronegative) and 23 twin-pair results (100% concordant) support an intrinsic specificity and PPV of ADAP approaching 100%. Maternal infection surveillance is limited by a time lag prior to delivery, especially during pandemic surges. Full article
(This article belongs to the Special Issue The COVID-19 Pandemic: The Impact on Newborn Screening Research, Clinical Care and Public Health)
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15 pages, 260 KiB  
Article
Newborn Screening Knowledge, Attitudes and Practices among Obstetrics-Gynecology Residents, Pediatric Residents, and Newborn Screening Nurses in a Tertiary Government Hospital in the Philippines during the COVID-19 Pandemic
by Patrick Jose D. Padilla and Eileen M. Manalo
Int. J. Neonatal Screen. 2023, 9(2), 19; https://doi.org/10.3390/ijns9020019 - 01 Apr 2023
Cited by 2 | Viewed by 3687
Abstract
Newborn Screening (NBS) saves babies from mental retardation and death. In the Philippines, it was formally established by law in 2004. Program success requires physicians, nurses, and midwives to educate and motivate parents. The COVID-19 pandemic reduced NBS coverage from 91.6% to 80% [...] Read more.
Newborn Screening (NBS) saves babies from mental retardation and death. In the Philippines, it was formally established by law in 2004. Program success requires physicians, nurses, and midwives to educate and motivate parents. The COVID-19 pandemic reduced NBS coverage from 91.6% to 80% between December 2019 and December 2020. This study aimed to (1) determine the knowledge, attitudes, and practices of residents and nurses relative to NBS during the COVID-19 pandemic; and (2) identify possible factors that may have affected NBS services at the Philippine General Hospital during the pandemic. Participants’ demographics were also compared with NBS practices. The study enrolled 189 participants employed during 2020. The results of a self-administered online questionnaire were evaluated. Only 31% of participants scored above a mean passing level for NBS knowledge set by experts. Most participants expressed a favorable attitude towards NBS. Knowledge scores were a significant factor in favorable attitude. Obstetrics-gynecology residents had lower attitude scores than Pediatric residents and NBS Nurses. Prenatal parent education was only practiced by 1/3 of participants. Despite the obstacles of the COVID-19 pandemic, participants appreciated the value of the NBS and were willing to perform specimen collection using safety precautions. Participants identified the need for additional NBS training. The challenges identified provide an avenue for further research with the goal of strengthening NBS, especially during a public health emergency. Full article
(This article belongs to the Special Issue The COVID-19 Pandemic: The Impact on Newborn Screening Research, Clinical Care and Public Health)
9 pages, 998 KiB  
Article
Newborn Screening Long-Term Follow-Up Clinics (Continuity Clinics) in the Philippines during the COVID-19 Pandemic: Continuing Quality Patient Care
by Ebner Bon G. Maceda, Michelle E. Abadingo, Karen Asuncion R. Panol, Frederick David E. Beltran, Ivy Rose C. Valdez-Acosta, Grandelee D. Taquiqui, Sharon B. Gawigawen, Maria Victoria L. Macalino, Laura Maria Soledad M. Aguirre-Aguinaldo, Marive A. Flores-Declaro, Karen June V. Ventilacion, Ma. Rita Anna Salve R. Boligao, Nancy G. Honor, Mirasol S. Ellong, Rona D. Ocho-Ortencio, Genelynne J. Beley, Maria Christina N. Bondoc-Eran, Bradford L. Therrell, Jr. and Carmencita D. Padilla
Int. J. Neonatal Screen. 2023, 9(1), 2; https://doi.org/10.3390/ijns9010002 - 29 Dec 2022
Cited by 2 | Viewed by 3406
Abstract
The COVID-19 pandemic has challenged healthcare systems worldwide. In the Philippines, long-term care for patients with conditions identified through newborn screening (NBS) is coordinated through Newborn Screening Continuity Clinics (NBSCCs). These clinics are integral to achieving optimal outcomes by providing follow-up oversight and [...] Read more.
The COVID-19 pandemic has challenged healthcare systems worldwide. In the Philippines, long-term care for patients with conditions identified through newborn screening (NBS) is coordinated through Newborn Screening Continuity Clinics (NBSCCs). These clinics are integral to achieving optimal outcomes by providing follow-up oversight and assistance for individuals identified through screening. Continuity of NBSCC care for NBS during the COVID-19 pandemic was both challenging and necessary and was accomplished through innovative strategies of dedicated personnel. Following the discontinuation of the community quarantine, a situation assessment survey was completed by each NBSCC to better understand the challenges encountered and their effect on patient care. Performance data from each NBSCC were reviewed both before and after an extended community quarantine (2018–2021) to evaluate the impact of NBSCC disaster contingency plans in overcoming the resultant challenges (transportation, supply chain, etc.). Thematic analysis of the survey showed three primary challenges: Operations, communications, and safety. In 2018 and 2019, successful patient contacts were 70.6% and 70.2%, respectively. During the pandemic, successful contacts were 74.9% in 2020 and 76.8% in 2021, demonstrating that the contact approaches taken by the NBSCCs were sufficient to maintain (and even improve) patient contacts. The number of unresponsive patients decreased during the pandemic likely due to decreased mobility and improved follow-up actions from the NBSCCs. Full article
(This article belongs to the Special Issue The COVID-19 Pandemic: The Impact on Newborn Screening Research, Clinical Care and Public Health)
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14 pages, 232 KiB  
Article
COVID-19 Pandemic-Related Impacts on Newborn Screening Public Health Surveillance
by Sikha Singh, Michele Caggana, Carol Johnson, Rachel Lee, Guisou Zarbalian, Amy Gaviglio, Alisha Keehn, Mia Morrison, Scott J. Becker and Jelili Ojodu
Int. J. Neonatal Screen. 2022, 8(2), 28; https://doi.org/10.3390/ijns8020028 - 15 Apr 2022
Cited by 5 | Viewed by 3479
Abstract
Newborn screening (NBS) is an essential public health service that performs screening to identify those newborns at increased risk for a panel of disorders, most of which are genetic. The goal of screening is to link those newborns at the highest risk to [...] Read more.
Newborn screening (NBS) is an essential public health service that performs screening to identify those newborns at increased risk for a panel of disorders, most of which are genetic. The goal of screening is to link those newborns at the highest risk to timely intervention and potentially life-saving treatment. The global COVID-19 pandemic led to disruptions within the United States public health system, revealing implications for the continuity of newborn screening laboratories and follow-up operations. The impacts of COVID-19 across different states at various time points meant that NBS programs impacted by the pandemic later could benefit from the immediate experiences of the earlier impacted programs. This article will review the collection, analysis, and dissemination of information during the COVID-19 pandemic facilitated by a national, centralized technical assistance and resource center for NBS programs. Full article
(This article belongs to the Special Issue The COVID-19 Pandemic: The Impact on Newborn Screening Research, Clinical Care and Public Health)
10 pages, 348 KiB  
Article
Improving Recruitment for a Newborn Screening Pilot Study with Adaptations in Response to the COVID-19 Pandemic
by Julia Wynn, Norma P. Tavakoli, Niki Armstrong, Jacqueline Gomez, Carrie Koval, Christina Lai, Stephanie Tang, Andrea Quevedo Prince, Yeyson Quevedo, Katrina Rufino, Laura Palacio Morales, Angela Pena, Sharon Grossman, Mary Monfiletto, Erika Ruda, Vania Jimenez, Lorraine Verdade, Ashley Jones, Michelle G. Barriga, Nandanee Karan, Alexandria Puma, Safa Sarker, Sarah Chin, Kelly Duarte, David H. Tegay, Irzaud Bacchus, Rajani Julooru, Breanne Maloney, Sunju Park, Akilan M. Saami, Lilian Cohen, Natasha Shapiro, Michele Caggana, Wendy K. Chung and Dorota Gruberadd Show full author list remove Hide full author list
Int. J. Neonatal Screen. 2022, 8(2), 23; https://doi.org/10.3390/ijns8020023 - 22 Mar 2022
Cited by 7 | Viewed by 2896
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 [...] Read more.
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. Full article
(This article belongs to the Special Issue The COVID-19 Pandemic: The Impact on Newborn Screening Research, Clinical Care and Public Health)
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8 pages, 396 KiB  
Article
Common Challenges and Identified Solutions for State Newborn Screening Programs during COVID-19 Pandemic
by Dylan Simon, Elizabeth Broadbridge, Mei Baker, Amy Gaviglio, Dorota Gruber, Kimberly Noble Piper, Norma P. Tavakoli, Jamie Sullivan and Annie Kennedy
Int. J. Neonatal Screen. 2022, 8(1), 7; https://doi.org/10.3390/ijns8010007 - 18 Jan 2022
Cited by 5 | Viewed by 3869
Abstract
During the COVID-19 pandemic, state newborn screening programs faced challenges to ensure this essential public health program continued to function at a high level. In December 2020, the EveryLife Foundation for Rare Diseases held a workshop to discuss these common challenges and solutions. [...] Read more.
During the COVID-19 pandemic, state newborn screening programs faced challenges to ensure this essential public health program continued to function at a high level. In December 2020, the EveryLife Foundation for Rare Diseases held a workshop to discuss these common challenges and solutions. Newborn screening officials described challenges including short staffing across the entire program, collection and transport of specimens, interrupted follow-up activities, and pilot study recruitment. To address these challenges, state programs implemented a wide variety of solutions to maintain the high standards of newborn screening. To address staffing issues, newborn screening programs, public health laboratories, and hospitals all cross-trained personnel, worked to manage staff stress, and established essential functions. Other solutions included working with courier companies to ensure the timely pick-up of specimen, creating educational materials for hospital staff, and the creation of hybrid recruitment models for pilot studies. Implementing the lessons discussed throughout this paper can help to prepare for the next public health emergencies to ensure that a program that interacts with millions of families every year and saves the lives of thousands of children every year is minimally impacted. Full article
(This article belongs to the Special Issue The COVID-19 Pandemic: The Impact on Newborn Screening Research, Clinical Care and Public Health)
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8 pages, 1263 KiB  
Article
Provider Perspectives on the Impact of the COVID-19 Pandemic on Newborn Screening
by Jessica I. Gold, Ian M. Campbell and Can Ficicioglu
Int. J. Neonatal Screen. 2021, 7(3), 38; https://doi.org/10.3390/ijns7030038 - 07 Jul 2021
Cited by 4 | Viewed by 2563
Abstract
The onset of the COVID-19 pandemic caused significant changes in healthcare delivery. Telemedicine rapidly and unexpectedly became the primary vehicle for ambulatory management. As newborn screen (NBS) referrals require varying levels of acuity, whether telemedicine could be used as a safe and effective [...] Read more.
The onset of the COVID-19 pandemic caused significant changes in healthcare delivery. Telemedicine rapidly and unexpectedly became the primary vehicle for ambulatory management. As newborn screen (NBS) referrals require varying levels of acuity, whether telemedicine could be used as a safe and effective medium to return these results were unknown. We sent an online survey to metabolism providers internationally to investigate triage differences of abnormal NBS results during the COVID-19 pandemic. The survey compared personal practice for the periods of March–June 2019 and March–June 2020. Responses were received from 44 providers practicing in 8 countries. Nearly all (93%) practiced in areas of widespread SARS-COV-2 community transmission during spring 2020. There was a significant expansion of telemedicine use for NBS referrals at the onset of the COVID-19 pandemic (OR: 12, 95% CI: 3.66–39.3, p < 0.0001). Telehealth primarily replaced in-person ambulatory metabolism visits. The increased frequency of virtual care was similar across NBS analytes. Providers found telehealth for NBS referral equally efficacious to in-person care. Institutional patient surveys showed no difference in satisfaction with provider communication, provider empathy, or appointment logistics. Our survey was limited by unprecedented disruption in healthcare delivery, necessitating further validation of telegenetics for NBS in the post-pandemic era. Nevertheless, our findings demonstrate that telemedicine is potentially a viable and practical tool for triaging abnormal NBS results. Full article
(This article belongs to the Special Issue The COVID-19 Pandemic: The Impact on Newborn Screening Research, Clinical Care and Public Health)
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11 pages, 1550 KiB  
Review
Newborn Screening in a Pandemic—Lessons Learned
by Matej Mlinaric, James R. Bonham, Viktor Kožich, Stefan Kölker, Ondrej Majek, Tadej Battelino, Ana Drole Torkar, Vanesa Koracin, Dasa Perko, Ziga Iztok Remec, Barbka Repic Lampret, Maurizio Scarpa, Peter C. J. I. Schielen, Rolf H. Zetterström and Urh Groselj
Int. J. Neonatal Screen. 2023, 9(2), 21; https://doi.org/10.3390/ijns9020021 - 11 Apr 2023
Cited by 1 | Viewed by 2347
Abstract
The COVID-19 pandemic affected many essential aspects of public health, including newborn screening programs (NBS). Centers reported missing cases of inherited metabolic disease as a consequence of decreased diagnostic process quality during the pandemic. A number of problems emerged at the start of [...] Read more.
The COVID-19 pandemic affected many essential aspects of public health, including newborn screening programs (NBS). Centers reported missing cases of inherited metabolic disease as a consequence of decreased diagnostic process quality during the pandemic. A number of problems emerged at the start of the pandemic, but from the beginning, solutions began to be proposed and implemented. Contingency plans were arranged, and these are reviewed and described in this article. Staff shortage emerged as an important issue, and as a result, new work schedules had to be implemented. The importance of personal protective equipment and social distancing also helped avoid disruption. Staff became stressed, and this needed to be addressed. The timeframe for collecting bloodspot samples was adapted in some cases, requiring reference ranges to be modified. A shortage of essential supplies and protective equipment was evident, and laboratories described sharing resources in some situations. The courier system had to be adapted to make timely and safe transport possible. Telemedicine became an essential tool to enable communication with patients, parents, and medical staff. Despite these difficulties, with adaptations and modifications, some centers evaluated candidate conditions, continued developments, or began new NBS. The pandemic can be regarded as a stress test of the NBS under real-world conditions, highlighting critical aspects of this multidisciplinary system and the need for establishing local, national, and global strategies to improve its robustness and reliability in times of shortage and overloaded national healthcare systems. Full article
(This article belongs to the Special Issue The COVID-19 Pandemic: The Impact on Newborn Screening Research, Clinical Care and Public Health)
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