ICD I49.8ORPHA:65283LQT8

Timothy Syndrome

Timothy syndrome is a very rare genetic condition caused by changes in the CACNA1C gene, which affects how calcium moves in and out of cells. It causes a dangerous heart rhythm problem known as long QT syndrome, and often webbed fingers or toes, along with developmental and learning differences. Care involves close heart monitoring, medicines such as beta blockers, and sometimes an implanted defibrillator, with support from a team of specialists.

112
Articles
2
Trials
Updated
17 September 2026
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Common Questions

What is Timothy Syndrome?

Timothy syndrome is a very rare genetic condition caused by changes in the CACNA1C gene, which affects how calcium moves in and out of cells. It causes a dangerous heart rhythm problem known as long QT syndrome, and often webbed fingers or toes, along with developmental and learning differences. Care involves close heart monitoring, medicines such as beta blockers, and sometimes an implanted defibrillator, with support from a team of specialists.

How many clinical trials are available for Timothy Syndrome?

RareWays currently indexes 2 clinical trials for Timothy Syndrome. Trial availability changes as new studies are registered — check the trials tab for current status.

Where does the research data for Timothy 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.