When and where the Sturge‑Weber mutation starts during fetal development

Developmental Origins of the Sturge Weber Syndrome Somatic Mutation

NIH-funded research Duke University · NIH-11266216

Researchers are testing how a specific GNAQ gene change in fetal cells leads to Sturge‑Weber syndrome to help children with facial birthmarks, brain blood vessel problems, and glaucoma.

Quick facts

Grant typeR21 grant
Study typeNIH-funded research
Funding institutionDuke University NIH-funded
Lab location1 site (Durham, United States)
Project IDNIH-11266216 on NIH RePORTER

What this research studies

If I or my child has Sturge‑Weber, this project aims to find which fetal cell types and exact developmental times cause the disease by using genetically engineered mice that carry the same GNAQ mutation seen in patients. The team will activate the mutation in different cell types and at different stages to see when brain and eye blood vessel malformations form. They will use imaging and tissue analysis to compare outcomes and refine a mouse model that more closely matches the human condition. A faithful model could be used later to test treatments and understand why some patients develop seizures, stroke‑like episodes, or glaucoma.

Who could benefit from this research

Good fit: People with Sturge‑Weber syndrome—especially infants and children with facial port‑wine birthmarks and signs of brain or eye involvement—would be the most relevant patient group for future related studies.

Not a fit: People without Sturge‑Weber or with unrelated vascular conditions are unlikely to receive direct benefit from this animal‑model research.

Why it matters

Potential benefit: If successful, the work could produce a faithful animal model that speeds development of therapies to prevent or treat seizures, stroke‑like episodes, and glaucoma in people with Sturge‑Weber.

How similar studies have performed: Researchers previously discovered the same GNAQ somatic mutation in patients and made a mouse that developed vascular malformations but was embryonic lethal, so this project builds on that work to create a more faithful and survivable model.

Where this research is happening

Durham, United States

Researchers

About this research

  1. This is an active NIH-funded research project — typically early-stage science, not a clinical trial accepting patient enrollment.
  2. Some NIH-funded labs run parallel clinical studies or seek volunteers for related work. To check, contact the principal investigator or institution listed above.
  3. For full project details, budget, and progress reports, visit the official NIH RePORTER page below.
Conditions Angiomatosis Oculoorbital-Thalamic SyndromeAnimal Disease Models
Last reviewed 2026-06-15 by the Find a Trial editorial team. Information on this page is for educational purposes and is not medical advice. Always consult qualified healthcare professionals about clinical trial participation.