Overview
Neonatal acute respiratory distress syndrome (neonatal ARDS), also known as neonatal respiratory distress syndrome (NRDS), hyaline membrane disease, or surfactant deficiency disorder, is a serious breathing condition that primarily affects premature infants. It occurs when the lungs have not produced enough surfactant — a mixture of lipids and proteins that lines the alveoli (tiny air sacs) and prevents them from collapsing during breathing. Without adequate surfactant, the alveoli collapse with each breath, making gas exchange extremely difficult and leading to progressive respiratory failure. The condition predominantly affects the pulmonary system but can secondarily impact multiple organ systems due to hypoxemia (low blood oxygen levels), including the brain, heart, and kidneys. Key clinical features appear shortly after birth and include rapid, labored breathing (tachypnea), grunting respirations, nasal flaring, chest wall retractions (visible sinking of the skin between and below the ribs), and cyanosis (bluish discoloration of the skin). Chest X-rays characteristically show a diffuse reticulogranular (ground-glass) pattern with air bronchograms. The severity of the condition is closely related to the degree of prematurity, with infants born before 28 weeks of gestation being at highest risk. The treatment landscape has improved dramatically over the past several decades. Antenatal corticosteroids (given to the mother before preterm delivery) accelerate fetal lung maturation and surfactant production. Postnatal treatment includes exogenous surfactant replacement therapy administered directly into the lungs via the trachea, which has significantly reduced mortality. Supportive care includes supplemental oxygen, continuous positive airway pressure (CPAP), and mechanical ventilation when necessary. Despite advances in treatment, neonatal ARDS remains a leading cause of morbidity and mortality in premature infants, and survivors may be at risk for bronchopulmonary dysplasia and long-term respiratory complications.
Also known as:
Clinical phenotype terms— hover any for plain English:
Multifactorial
Caused by a mix of several genes and environmental factors
Neonatal
Begins at or shortly after birth (first 4 weeks)
FDA & Trial Timeline
10 eventsMedical College of Wisconsin — NA
Muhammad Aamir Latif — NA
Mansoura University Children Hospital — NA
Tanta University
University of Texas Southwestern Medical Center
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
2 availableExosurf Neonatal for Intratracheal Suspension
Prevention of hyaline membrane disease (HMD) in infants born at 32 weeks gestation or less
Infasurf
Treatment and prevention of respiratory failure due to pulmonary surfactant deficiency in preterm infants.
Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to Neonatal acute respiratory distress syndrome.
Community
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Start the conversation →Latest news about Neonatal acute respiratory distress syndrome
Disease timeline:
New recruiting trial: PRICO: OPTI Target Range
A new clinical trial is recruiting patients for Neonatal acute respiratory distress syndrome
New recruiting trial: Premedication for Less Invasive Surfactant Administration
A new clinical trial is recruiting patients for Neonatal acute respiratory distress syndrome
New recruiting trial: Misoprostol Before Caesarean Section
A new clinical trial is recruiting patients for Neonatal acute respiratory distress syndrome
New recruiting trial: Endocan and Copeptin Serum Levels in Preterm Neonates With Respiratory Distress Syndrome
A new clinical trial is recruiting patients for Neonatal acute respiratory distress syndrome
New recruiting trial: Respiratory Distress and Elective Cesarean Section at Term
A new clinical trial is recruiting patients for Neonatal acute respiratory distress syndrome
New recruiting trial: The Role of Lung Ultrasonography Score in Predicting Prognosis in Term and Late Preterm Newborns With Postnatal Respiratory Distress
A new clinical trial is recruiting patients for Neonatal acute respiratory distress syndrome
New recruiting trial: Effect of L-Carnitine Supplementation in Preterm Neonates
A new clinical trial is recruiting patients for Neonatal acute respiratory distress syndrome
New recruiting trial: Non Inferiority Trial Investigating Surfactants Administered Via MIST
A new clinical trial is recruiting patients for Neonatal acute respiratory distress syndrome
New recruiting trial: InfasurfAero™ Versus Sham Treatment in Preterm Newborns With RDS
A new clinical trial is recruiting patients for Neonatal acute respiratory distress syndrome
New recruiting trial: Open-label Randomized Controlled Trial of Two Protocols for Weaning From High Frequency Oscillatory Ventilation in Preterm Neonates With Respiratory Distress Syndrome Admitted in the NICU of Mansoura University Children Hospital
A new clinical trial is recruiting patients for Neonatal acute respiratory distress syndrome
Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
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Family & Caregiver Grants
Financial assistance programs specifically for caregivers of rare disease patients.
Social Security Disability
Learn how rare disease patients may qualify for SSDI/SSI benefits.
Common questions about Neonatal acute respiratory distress syndrome
What is Neonatal acute respiratory distress syndrome?
Neonatal acute respiratory distress syndrome (neonatal ARDS), also known as neonatal respiratory distress syndrome (NRDS), hyaline membrane disease, or surfactant deficiency disorder, is a serious breathing condition that primarily affects premature infants. It occurs when the lungs have not produced enough surfactant — a mixture of lipids and proteins that lines the alveoli (tiny air sacs) and prevents them from collapsing during breathing. Without adequate surfactant, the alveoli collapse with each breath, making gas exchange extremely difficult and leading to progressive respiratory failure
How is Neonatal acute respiratory distress syndrome inherited?
Neonatal acute respiratory distress syndrome follows a multifactorial inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Neonatal acute respiratory distress syndrome typically begin?
Typical onset of Neonatal acute respiratory distress syndrome is neonatal. Age of onset can vary across affected individuals.
Are there clinical trials for Neonatal acute respiratory distress syndrome?
Yes — 5 recruiting clinical trials are currently listed for Neonatal acute respiratory distress syndrome on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.
Which specialists treat Neonatal acute respiratory distress syndrome?
25 specialists and care centers treating Neonatal acute respiratory distress syndrome are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.
What treatment and support options exist for Neonatal acute respiratory distress syndrome?
2 patient support programs are currently tracked on UniteRare for Neonatal acute respiratory distress syndrome. See the treatments and support programs sections for copay assistance, eligibility, and contact details.