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Coverage: 2020-01-01 onwards, with up to 300 results per query from PubMed and Europe PMC and separate limits on other sources. This is a selected index, not a complete literature search.

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ICD E77.8ORPHA:404454

NGLY1 Deficiency

NGLY1 deficiency is a very rare inherited condition caused by changes in the NGLY1 gene, which normally helps the body recycle proteins that carry sugar chains. Children may have developmental delay, movement problems such as choreoathetosis, seizures, reduced or absent tears, and liver changes. There is no cure, so care focuses on therapies, seizure control and eye lubrication, with research ongoing.

This overview is general information, not an individual medical assessment. Research is selected automatically and may include mismatches. How we select and explain research.

91
Articles
2
Trials
Data refreshed
26 September 2026
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Common Questions

What is NGLY1 Deficiency?

NGLY1 deficiency is a very rare inherited condition caused by changes in the NGLY1 gene, which normally helps the body recycle proteins that carry sugar chains. Children may have developmental delay, movement problems such as choreoathetosis, seizures, reduced or absent tears, and liver changes. There is no cure, so care focuses on therapies, seizure control and eye lubrication, with research ongoing.

How many clinical trials are available for NGLY1 Deficiency?

RareWays currently indexes 2 clinical trials for NGLY1 Deficiency. These counts cover indexed trials across countries, not just your country. An Australian site does not necessarily mean that site is recruiting. Check locations, eligibility and current availability with the study team.

Where does the research data for NGLY1 Deficiency come from?

RareWays aggregates research from PubMed, Europe PMC, OpenAlex, and ClinicalTrials.gov. Data is refreshed automatically every day. All articles and trials link directly to their original sources.

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