How a PACS1 gene change affects brain development in PACS1 syndrome

Identifying pathogenic mechanisms underlying PACS1 Syndrome: implications for neural development

NIH-funded research Northwestern University · NIH-11370055

This project looks at how a single PACS1 gene change alters brain cells to help people with PACS1 syndrome and related neurodevelopmental conditions.

Quick facts

Grant typeR01 grant
Study typeNIH-funded research
Funding institutionNorthwestern University NIH-funded
Lab location1 site (Chicago, United States)
Project IDNIH-11370055 on NIH RePORTER

What this research studies

Researchers use cells from people with PACS1 syndrome and turn them into lab-grown brain cells and 3-D mini-brains to model the condition. They will study how the R203W change in PACS1 affects the protein's roles in the cell, including its movement into the nucleus and effects on chromatin and gene regulation. Patient-derived samples will be compared to healthy controls and combined with other lab models to trace the molecular and cellular steps that go wrong. The team aims to pinpoint biological mechanisms that could guide future therapies.

Who could benefit from this research

Good fit: People with a confirmed diagnosis of PACS1 syndrome—especially those carrying the R203W PACS1 variant—or families willing to donate biological samples would be the most relevant participants.

Not a fit: People whose neurodevelopmental condition is caused by unrelated genetic changes or who need immediate clinical treatments are unlikely to benefit directly from this basic laboratory research.

Why it matters

Potential benefit: If successful, this work could reveal molecular targets that lead to new treatments to improve brain development or symptoms in people with PACS1 syndrome and related disorders.

How similar studies have performed: Using patient-derived cells and 3-D brain organoids has helped clarify mechanisms in several genetic brain disorders, but PACS1-specific biology remains largely novel and less tested.

Where this research is happening

Chicago, 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.
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Last reviewed 2026-06-13 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.