ICD Q80.8ORPHA:634NS

Netherton Syndrome

Netherton syndrome is a rare inherited skin condition caused by changes in the SPINK5 gene. It causes red, scaly and inflamed skin from birth, fragile hair with a distinctive bamboo-like shaft, and a strong tendency to allergies, asthma and food reactions. Babies can lose fluid and heat through the skin and are prone to infection. Care involves skin barrier treatments, infection control, nutrition support and allergy management.

247
Articles
18
Trials (1 AU)
Updated
13 September 2026
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Common Questions

What is Netherton Syndrome?

Netherton syndrome is a rare inherited skin condition caused by changes in the SPINK5 gene. It causes red, scaly and inflamed skin from birth, fragile hair with a distinctive bamboo-like shaft, and a strong tendency to allergies, asthma and food reactions. Babies can lose fluid and heat through the skin and are prone to infection. Care involves skin barrier treatments, infection control, nutrition support and allergy management.

How many clinical trials are available for Netherton Syndrome?

RareWays currently indexes 18 clinical trials for Netherton Syndrome, of which 5 are actively recruiting. Trial availability changes as new studies are registered — check the trials tab for current status.

Where does the research data for Netherton Syndrome come from?

RareWays aggregates research from PubMed, Europe PMC, OpenAlex, and ClinicalTrials.gov. Data is updated regularly by Rocky, RareWays' automated research engine. All articles and trials link directly to their original sources.

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This information is for general awareness only.

For guidance specific to your situation, please speak with your healthcare team.