NON RARE IN EUROPE: Sudden infant death syndrome

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ORPHA:415687
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1Active trials8Treatment centers

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What is NON RARE IN EUROPE: Sudden infant death syndrome?

Sudden Infant Death Syndrome, commonly known as SIDS or 'crib death,' is the sudden and unexplained death of an apparently healthy baby, usually during sleep. It is the leading cause of death in babies between one month and one year of age. Despite decades of research, doctors still do not fully understand why SIDS happens. It is thought to involve a combination of factors, including a baby's developing brain not properly controlling breathing and heart rate during sleep, combined with environmental risks and a vulnerable stage of development. SIDS does not cause visible symptoms before it happens — there is no warning sign that parents or doctors can detect in advance. The baby appears completely healthy. Death typically occurs silently during sleep, which is why it is sometimes called 'crib death.' Doctors diagnose SIDS only after ruling out all other possible causes of death through a thorough investigation, including an autopsy, a review of the baby's medical history, and an examination of where the baby was sleeping. There is no treatment for SIDS itself, but there are well-proven steps that significantly reduce the risk. The most important is placing babies on their backs to sleep on a firm, flat surface, in their own safe sleep space, free of soft bedding, pillows, and toys. Breastfeeding, avoiding smoke exposure, and keeping the baby's room at a comfortable temperature also lower the risk. Public health campaigns promoting these safe sleep practices have helped reduce SIDS rates dramatically over the past 30 years.

Also known as:

Key symptoms:

Sudden, unexplained death during sleep in an apparently healthy infantNo signs of suffering or distress foundDeath typically occurs between midnight and 6 AMBaby found unresponsive in their sleep spaceNo identifiable cause found even after full medical investigation

Inheritance
Multifactorial
Caused by a mix of several genes and environmental factors
Age of Onset
Infantile
Begins in infancy, roughly 1 month to 2 years old
Orphanet ↗NORD ↗

FDA & Trial Timeline

1 event
Sep 2023Environmental Exposures and Sudden Unexpected Infant Death

Nantes University Hospital

TrialACTIVE NOT RECRUITING

Data is compiled from FDA regulatory filings and ClinicalTrials.gov, then processed through automated extraction; event classifications and dates may occasionally be misclassified. Verify against the linked FDA filing or trial record before clinical decisions. Updated periodically.

Treatments

Source: openFDA + DailyMed · NDA / BLA labels with structured indications · refreshed weekly

No FDA-approved treatments are currently listed for NON RARE IN EUROPE: Sudden infant death syndrome.

1 clinical trialare actively recruiting — trials can provide access to cutting-edge therapies.

View clinical trials →

Clinical Trials

1 recruitingView all trials with filters →

Source: ClinicalTrials.gov · synced daily · phases, status, and PI names normalized at ingest

Other1 trial
Environmental Exposures and Sudden Unexpected Infant Death
Active — not recruiting
· Sites: Nantes

Source: NPI Registry + PubMed · trial PI roles cross-referenced with ClinicalTrials.gov · ranked by match score (publications + PI activity + community signal)

No specialists are currently listed for NON RARE IN EUROPE: Sudden infant death syndrome.

View NORD Rare Disease Centers ↗Undiagnosed Disease Network ↗

Treatment Centers

8 centers

Source: NORD Rare Disease Centers + NIH Undiagnosed Diseases Network (UDN) · centers verified active within last 12 months

🏨 Children's

Children's Hospital Colorado Rare Disease Program

Children's Hospital Colorado

📍 Aurora, CO

👤 Boston Children's Hospital Rare Disease Program

🔬 UDN

Harvard/MGH UDN Clinical Site

Massachusetts General Hospital

📍 Boston, MA

🏥 NORD

Boston Children's Hospital Rare Disease Program

Boston Children's Hospital

📍 Boston, MA

👤 Boston Children's Hospital Rare Disease Program

🏥 NORD

UCLA Rare Disease Day Program

UCLA Health

📍 Los Angeles, CA

🏨 Children's

Ann & Robert H. Lurie Children's Hospital Genetics

Lurie Children's Hospital

📍 Chicago, IL

👤 Boston Children's Hospital Rare Disease Program

🏥 NORD

Cincinnati Children's Hospital Medical Center

Cincinnati Children's

📍 Cincinnati, OH

👤 Boston Children's Hospital Rare Disease Program

🏨 Children's

Nationwide Children's Hospital Rare Disease Center

Nationwide Children's Hospital

📍 Columbus, OH

👤 Boston Children's Hospital Rare Disease Program

🔬 UDN

NIH Clinical Center Undiagnosed Diseases Program

National Institutes of Health

📍 Bethesda, MD

Travel Grants

No travel grants are currently matched to NON RARE IN EUROPE: Sudden infant death syndrome.

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Latest news about NON RARE IN EUROPE: Sudden infant death syndrome

Source: PubMed + NIH RePORTER + openFDA + clinical-journal RSS · last 30 days · disease-tagged at ingest by AI extraction with human QC

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Questions for your doctor

Bring these to your next appointment

  • Q1.What safe sleep practices are most important for reducing my baby's risk of SIDS?,Are there any risk factors specific to my baby — such as prematurity or family history — that I should know about?,Should my baby have any genetic or heart tests given our family history?,Is a home breathing monitor recommended for my baby, and would it actually help?,What support resources are available for our family if we have experienced a SIDS loss?,How does breastfeeding reduce SIDS risk, and what support is available to help me breastfeed?,If we have another baby in the future, what extra precautions should we take?

Common questions about NON RARE IN EUROPE: Sudden infant death syndrome

What is NON RARE IN EUROPE: Sudden infant death syndrome?

Sudden Infant Death Syndrome, commonly known as SIDS or 'crib death,' is the sudden and unexplained death of an apparently healthy baby, usually during sleep. It is the leading cause of death in babies between one month and one year of age. Despite decades of research, doctors still do not fully understand why SIDS happens. It is thought to involve a combination of factors, including a baby's developing brain not properly controlling breathing and heart rate during sleep, combined with environmental risks and a vulnerable stage of development. SIDS does not cause visible symptoms before it ha

How is NON RARE IN EUROPE: Sudden infant death syndrome inherited?

NON RARE IN EUROPE: Sudden infant death syndrome follows a multifactorial inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

At what age does NON RARE IN EUROPE: Sudden infant death syndrome typically begin?

Typical onset of NON RARE IN EUROPE: Sudden infant death syndrome is infantile. Age of onset can vary across affected individuals.

Are there clinical trials for NON RARE IN EUROPE: Sudden infant death syndrome?

Yes — 1 recruiting clinical trial is currently listed for NON RARE IN EUROPE: Sudden infant death syndrome on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.

Explore related conditions

Conditions related to NON RARE IN EUROPE: Sudden infant death syndrome

Other rare diseases that share clinical features, genetic basis, or diagnostic-code family with NON RARE IN EUROPE: Sudden infant death syndrome. These are starting points for further reading, not a substitute for a clinician's assessment.

Frequently asked questions about NON RARE IN EUROPE: Sudden infant death syndrome

Auto-generated from canonical disease facts (Orphanet, OMIM, ClinicalTrials.gov, openFDA, NPPES). Not a substitute for clinical guidance.

  1. What is NON RARE IN EUROPE: Sudden infant death syndrome?

    NON RARE IN EUROPE: Sudden infant death syndrome is a rare disease catalogued in international rare-disease ontologies (Orphanet ORPHA:415687). It is typically inherited as multifactorial. Age of onset is generally infantile. For verified primary sources, see the UniteRare NON RARE IN EUROPE: Sudden infant death syndrome page.

  2. How is NON RARE IN EUROPE: Sudden infant death syndrome inherited?

    NON RARE IN EUROPE: Sudden infant death syndrome follows multifactorial inheritance. Genetic counseling is recommended for affected families to understand recurrence risk in offspring and the likelihood of unaffected siblings being carriers. Variants in the underlying gene(s) may be identified via clinical genetic testing.

  3. Are there FDA-approved treatments for NON RARE IN EUROPE: Sudden infant death syndrome?

    Approved treatments for NON RARE IN EUROPE: Sudden infant death syndrome are tracked from openFDA and DailyMed primary sources. Many rare diseases have no specific FDA-approved therapy; for those, supportive care and management of complications form the basis of clinical care. Orphan-drug-designation status is noted where applicable.

  4. Are there clinical trials recruiting for NON RARE IN EUROPE: Sudden infant death syndrome?

    UniteRare currently lists 1 clinical trial relevant to NON RARE IN EUROPE: Sudden infant death syndrome sourced from ClinicalTrials.gov. Each trial entry includes recruitment status, eligibility criteria summary, principal-investigator information, and study locations. Patients should discuss eligibility with their healthcare provider before enrolling.

  5. How do I find a specialist for NON RARE IN EUROPE: Sudden infant death syndrome?

    Verified NON RARE IN EUROPE: Sudden infant death syndrome specialists are identified through ClinicalTrials.gov principal-investigator records, peer-reviewed publication authorship (via PubMed), and the NPPES NPI registry. NORD-designated Centers of Excellence and NIH-affiliated rare-disease clinics are also tracked. UniteRare's specialist directory is updated continuously as new evidence becomes available.

See full NON RARE IN EUROPE: Sudden infant death syndrome page for complete clinical details, sources, and verified-specialist listings.

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