Identifying genetic causes of rare diseases in children using advanced DNA sequencing

Long-read genome sequencing for the discovery of highly penetrant variation in rare diseases

NIH-funded research Hudson-Alpha Institute for Biotechnology · NIH-10881397

This study is looking to find hidden genetic clues that might explain rare brain development disorders in kids by analyzing DNA from 500 affected children and their parents, so families can better understand their child's condition.

Quick facts

Grant typeR01 grant
Study typeNIH-funded research
Funding institutionHudson-Alpha Institute for Biotechnology NIH-funded
Lab location1 site (Huntsville, United States)
Project IDNIH-10881397 on NIH RePORTER

What this research studies

This research aims to enhance the identification of genetic factors contributing to rare diseases, particularly neurodevelopmental disorders in children. By utilizing a cutting-edge DNA sequencing technology called HiFi from Pacific Biosciences, the project will sequence the genomes of 500 affected children and their parents to uncover genetic variants that may have been overlooked by traditional methods. The study will generate detailed genetic maps and analyze the data to pinpoint variants that could be linked to the children's symptoms. If relevant variants are identified, genetic counselors will communicate these findings to the families, providing them with valuable insights into their child's condition.

Who could benefit from this research

Good fit: Ideal candidates for this research are children under 11 years old who are affected by rare neurodevelopmental disorders.

Not a fit: Patients who do not have rare genetic disorders or are over the age of 11 may not benefit from this research.

Why it matters

Potential benefit: If successful, this research could lead to more accurate diagnoses and targeted treatments for children with rare genetic disorders.

How similar studies have performed: Previous research using advanced genome sequencing technologies has shown promise in identifying genetic variants associated with various conditions, suggesting a strong potential for success in this approach.

Where this research is happening

Huntsville, 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.
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.