The NICHD neonatal research network: changes in practice and outcomes during the first 15 years

doi:10.1016/S0146-0005(03)00055-7

Seminars in Perinatology

Volume 27, Issue 4, August 2003, Pages 281-287

https://doi.org/10.1016/S0146-0005(03)00055-7 Get rights and content

Abstract

The National Institute of Child Health and Human Development (NICHD) Neonatal Research Network was founded in 1986 to perform trials that, because of their size and complexity, were beyond the scope of a single center and required the expertise and resources of many collaborating centers. This report briefly documents changes in mortality, selected morbidities, and therapies amongst Network centers. The Network registry incorporating perinatal and neonatal data on all infants with a birth weight 501–1500 g cared for at participating centers served as the database. Mortality and selected morbidities were compared for 3 time periods, 1987/1988, (7centers 1,765 infants, presurfactant); 1993/1994 (12 centers, 4,593 infants, postsurfactant and moderate antenatal corticosteroid utilization); and 1999/2000 (15 centers, 5,848 infants, postsurfactant and widespread corticosteroid use). Detailed outcomes for infants with birth weights between 501 and 800 g, and gestational ages of 23 to 25 weeks are also presented because they dramatically document the changes over time. Mortality for the entire cohort decreased from 23% in 1987/1988 to 17% in 1993/1994 and 14% in 1999/2000. Between 1987/1988 and 1999/2000 mortality prior to discharge, decreased from 66% to 45% for infants weighing 501–750 g; from 34% to 12% for birth weight between 751 to 1000 g, and from 13% to 7% for infants between 1001 and 1500 g. Mortality was higher in boys. Survival free of major morbidity (chronic lung disease /bronchopulmonary dysplasia, necrotizing enterocolitis or grade III/IV intraventricular hemorrhage) did not change significantly over time. Since the inception of the Network, multiple births have increased from 18% to 26%; deliveries by Cesarean section from 47% to 57%, and antenatal corticosteroid use increased from 16% to 79%. Surfactant, which was not used prior to 1990, is now given to 57% of the infants, including 87% with birth weights between 501 and 750 g. There have been significant decreases in the incidence of grade III–IV intraventricular hemorrhage from 18% in 1987/1988 to about 11% since 1993/1994, and periventricular leukomalacia from 8% to 3%. However, other morbidities, including necrotizing enterocolitis, patent ductus arteriosus, and late onset sepsis, have not changed substantially. Advances in perinatal care within NICHD Network centers have resulted in marked improvements in survival. Further advances are required to increase survival free of neonatal morbidity or neurodevelopmental impairment.

Section snippets

Methods

Since its inception, NICHD Neonatal Research Network maintained a very low birth weight (VLBW) registry incorporating perinatal and neonatal data on all infants with a birth weight less than 1500 g cared for at participating centers. In the registry, maternal and infant data are collected by using common definitions developed by the investigators, and described in the study Manual of Operations and in previous publications.1, 2, 3, 4, 5 This database has examined factors contributing to

Results

Selected perinatal parameters are presented for the total population in Table 1 and by birth weight categories in Table 2.

Antenatal corticosteroid use increased from 16% in 1987/1988 to 79% in 1999/2000 and maternal antibiotic administration increased from 42% to 70% (P <. 01) between 1993/1994 and 1999/2000 (Table 1). Since the inception of the Network, multiple births have increased from 18% to 26% and deliveries by cesarean section have increased from 47% to 57%. However, the need for

Discussion

We have documented the changes in mortality and major morbidities during the first 15 years of the Network. Noticeable improvements in mortality were documented after the introduction of surfactant therapy to the Network centers in 1990. Remarkably, all network centers were naı̈ve to surfactant so that its impact could be measured. Horbar et al6 was able to show a decline in mortality from 28% to 20% for infants with birth weights 601–1300 g after the widespread availability and utilization of

Conclusion

Over the course of the Network, we have documented a significant improvement in the survival of infants with birth weights between 501 and 1500 g. These can be attributed to a combination of factors, including improved technology and better understanding of the patho-physiology of disease in these low birth weight infants. Surfactant therapy and increased utilization of antenatal corticosteroids have also played a role. However, there have been no substantial improvements in outcomes over the

References (24)

M. Hack et al.
Very-low-birth-weight outcomes of the National Institute of Child Health and Human Developmental Neonatal Network, November 1989 to October 1990
Am J Obstet Gynecol
(1995)
A. Fanaroff et al.
Very-low-birth-weight outcomes of the National Institute of Child Health and Human Development Neonatal Research Network, May 1991 through December 1992
Am J Obstet Gynecol
(1995)
D. Stevenson et al.
Very-low-birth-weight (VLBW) outcomes of the NICHD Neonatal Research Network, January 1993 through December 1994
Am J Obstet Gynecol
(1998)
M. Hack et al.
Outcomes of children of extremely low birthweight and gestational age in the 1990s
Semin Neonatol
(2000)
J.L. Ballard et al.
New Ballard Score, expanded to include extremely premature infants
J Pediatr
(1991)
E.F. Donovan et al.
Inaccuracy of Ballard scores before 28 weeks’ gestation. National Institute of Child Health and Human Development Neonatal Research Network
J Pediatr
(1999)
S. Shankaran et al.
Risk factors for early death among extremely low-birth-weight infants
Am J Obstet Gynecol
(2002)
M. Hack et al.
Very low birth weight outcomes of the National Institute of Child Health and Human Developmental Neonatal Network
Pediatrics
(1991)
J.A. Lemons et al.
Very low birth weight outcomes of the National Institute of Child Health and Human Development Neonatal Research Network, January 1995 through December 1996. NICHD Neonatal Research Network
Pediatrics
(2001)
J.D. Horbar et al.
Decreasing mortality associated with the introduction of surfactant therapy: An observational study of neonates weighing 601 to 1300 grams at birth. The members of the National Institute of Child Health and Human Development Neonatal Research Network
Pediatrics
(1995)

M.F. McDorman et al.

Infant mortality statistics from the 1997 period linked birth/infant death data set

Natl Vital Stat Rep

(1999)

D.L. Hoyert et al.

Annual summary of vital statistics: 2000

Pediatrics

(2001)

Cited by (322)

Functional results in children with retinopathy of prematurity treated with intravitreal bevacizumab
2023, Archivos de la Sociedad Espanola de Oftalmologia
El propósito del presente estudio es determinar la eficacia y describir los resultados funcionales en términos de agudeza visual y defecto refractivo a largo plazo del tratamiento con una dosis de bevacizumab intravítreo en pacientes con retinopatía del prematuro (ROP) tipo 1 de alto riesgo.
Se trata de un estudio clínico retrospectivo en el que se seleccionaron todos los pacientes con ROP preumbral tipo 1 de alto riesgo tratados según práctica clínica habitual con bevacizumab intravítreo entre diciembre de 2013 y enero de 2018. Los pacientes con un seguimiento inferior a tres años fueron excluidos. Se registraron los datos de agudeza visual y refracción bajo cicloplejia de la última exploración oftalmológica realizada. Se definió la variable éxito como ausencia de retratamiento con anti-VEGF intravítreo o láser durante el tiempo de seguimiento.
Se incluyeron en el análisis 76 ojos de 38 pacientes. Un total de 20 pacientes (40 ojos) tenían valoración de mejor agudeza visual corregida tomada utilizando la prueba de Snellen. La edad media de estos pacientes era de 6 años (intervalo 4-9). La agudeza visual mediana fue de 0,80 (RIQ: 0,50; 1,00). Treinta y cuatro ojos (85%) tenían buena agudeza visual (mayor o igual a 0,5). Se obtuvo la refracción bajo cicloplejia de 74 ojos de 37 pacientes. La mediana del equivalente esférico en la última revisión fue de + 0,94 (RIQ: −0,25; 1,88). La tasa de éxito fue del 96,05%.
El bevacizumab intravítreo es una terapia efectiva con buenos resultados funcionales para ROP tipo 1 de alto riesgo. En nuestro estudio se observó buena respuesta al tratamiento, con una tasa de éxito superior al 95%.
The aim of the study is to describe the efficacy and to determine the functional outcome in terms of visual acuity and refractive defect of a single dose of intravitreal bevacizumab in patients with high-risk ROP type 1.
In this retrospective clinical study patients diagnosed between December 2013 and January 2018 with high-risk pre-threshold ROP type 1 and treated with intravitreal bevacizumab were selected. All patients were treated following the established protocol at our centre. Those patients with less than three-year follow-up were excluded. Visual acuity and cycloplegic refraction in the last visit were registered. Treatment efficacy was defined as the absence of retreatment with intravitreal anti-VEGF or laser during follow-up.
A total of 38 infants (76 eyes) were included in the analysis. Twenty infants (40 eyes) completed visual acuity testing. Mean age was 6 years (IQR: 4-9). Median visual acuity was 0.8 (IQR: 0.5-1). Thirty-four eyes (85%) had good visual acuity (greater than or equal to 0.5). Thirty-seven patients (74 eyes) had cycloplegic refraction measured. Median spherical equivalent at the last visit was +0.94 (IQR: −0.25; 1.88). Treatment success rate was 96.05%.
Intravitreal bevacizumab treatment showed good functional outcome in patients with high-risk ROP type 1. In our study, good response to treatment was observed with a success rate over 95%.
Ethics, Data, and Policy in Newborn Intensive Care
2023, Avery's Diseases of the Newborn
Ethical decisions in neonatal intensive care are guided by data. We have more outcome data than ever before. Despite better ability to predict outcomes for sick infants, prognostic efforts remain imperfect. There are policy implications related to the abundance of data and its limitations. When using data to guide decision-making in the neonatal intensive care unit, it is important to choose appropriate outcomes that match families’ values.
Neonatal infections: Insights from a multicenter longitudinal research collaborative
2022, Seminars in Perinatology
For more than 30 years, the Neonatal Research Network (NRN) has conducted studies addressing the epidemiology of neonatal infections, including incidence, microbiology, maternal and neonatal risk factors, associated clinical findings, and outcomes. These studies have provided clinicians and policymakers critical data needed to inform national guidance for infection risk assessment and support daily practice. Further, NRN studies have prompted research into optimal approaches to infection diagnosis, treatment, and antimicrobial stewardship. In this article, we summarize the key findings of NRN infection-related studies, with an emphasis on those published in 2000 or later.
Predicting physical activity in a national cohort of children born extremely preterm
2020, Early Human Development
Predicting physical activity in a national cohort of children born extremely preterm.
To compare physical activity among school-aged children born extremely preterm or with extremely low birthweight (EP/ELBW) to term-born children, and to identify early predictors for physical inactivity in the EP/ELBW-children.
A national cohort born during 1999–2000 at gestational age < 28 weeks or birthweight <1000 g and term-born controls were assessed. EP/ELBW-children without neurodevelopmental disabilities were labeled “healthy”. At five years, we examined the EP/ELBW-children's motor, mental and intellectual functioning using the Movement Assessment Battery for Children (MABC), The Strength and Difficulties Questionnaire (SDQ) and The Wechsler Preschool and Primary Scale of Intelligence-revised. At 11 years, the parents reported their children's physical activity (PA) in questionnaires.
Information was obtained from 231/372 EP/ELBW and 57/61 term-born children. At 11 years, EP/ELBW-children had fewer exercise events per week, were less engaged in team sports, had lower endurance, lower sports proficiency, and were less vigorous during PA than term-born children (p < 0.05). Low sports proficiency in the healthy EP/ELBW-children at 11 years was predicted (odds ratio; 95% confidence interval) by abnormal MABC-score (3.0; 1.0 to 8.7), and abnormal SDQ-score (4.0; 1.6 to 10.0) at 5 years. Lower endurance at PA was predicted by abnormal MABC-score (2.6; 1.0 to 6.6), abnormal SDQ-score (3.0; 1.4 to 6.5), and borderline intellectual functioning (4.2; 1.8 to 10.1).
Eleven-year-old EP/ELBW-children were less physically active than term-born. In healthy EP/ELBW-children, impaired motor coordination, borderline intellectual functioning and behavioral problems at 5 years of age predicted unfavorable PA habits at 11 years.
Improved Referral of Very Low Birthweight Infants to High-Risk Infant Follow-Up in California
2020, Journal of Pediatrics
To examine changes in referral rates of very low birthweight (birthweight <1500 g) infants to high-risk infant follow-up in California and identify factors associated with referral before and after implementation of a statewide initiative in 2013 to address disparities in referral.
We included very low birthweight infants born 2010-2016 in the population-based California Perinatal Quality Care Collaborative who survived to discharge home. We used multivariable logistic regression to examine factors associated with referral and derive risk-adjusted referral rates by neonatal intensive care unit (NICU) and region.
Referral rate improved from 83.0% (preinitiative period) to 94.9% (postinitiative period); yielding an OR of 1.48 (95% CI, 1.26-1.72) for referral in the postinitiative period after adjustment for year. Referral rates improved the most (≥15%) for infants born at ≥33 weeks of gestation, with a birthweight of 1251-1500 g, and born in intermediate and lower volume NICUs. After the initiative, Hispanic ethnicity, small for gestational age status, congenital anomalies, and major morbidities were no longer associated with a decreased odds of referral. Lower birthweight, outborn status, and higher NICU volume were no longer associated with increased odds of referral. African American race was associated with lower odds of referral, and higher NICU level with a higher odds of referral during both time periods. Referral improved in many previously poor-performing NICUs and regions.
High-risk infant follow-up referral of very low birthweight infants improved substantially across all sociodemographic, perinatal, and clinical variables after the statewide initiative, although disparities remain. Our results demonstrate the benefit of a targeted initiative in California, which may be applicable to other quality collaboratives.
Institutional Trend in Device Selection for Transcatheter PDA Closure in Premature Infants
2022, Pediatric Cardiology

View all citing articles on Scopus

View full text

The NICHD neonatal research network: changes in practice and outcomes during the first 15 years

Abstract

Section snippets

Methods

Results

Discussion

Conclusion

Am J Obstet Gynecol

Am J Obstet Gynecol

Am J Obstet Gynecol

Semin Neonatol

J Pediatr

J Pediatr

Am J Obstet Gynecol

Very low birth weight outcomes of the National Institute of Child Health and Human Developmental Neonatal Network

Pediatrics

Very low birth weight outcomes of the National Institute of Child Health and Human Development Neonatal Research Network, January 1995 through December 1996. NICHD Neonatal Research Network

Pediatrics

Decreasing mortality associated with the introduction of surfactant therapy: An observational study of neonates weighing 601 to 1300 grams at birth. The members of the National Institute of Child Health and Human Development Neonatal Research Network

Pediatrics

Infant mortality statistics from the 1997 period linked birth/infant death data set

Natl Vital Stat Rep

Annual summary of vital statistics: 2000

Pediatrics