Advanced DNA Reading for Rare Diseases in Children

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

NIH-funded research Hudson-Alpha Institute for Biotechnology · NIH-11170608

This project uses a new DNA sequencing method to find the genetic causes of rare diseases, especially neurodevelopmental disorders in children.

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-11170608 on NIH RePORTER

What this research studies

This project aims to improve how we find genetic causes for rare diseases, particularly neurodevelopmental disorders in children. Researchers will use a special DNA sequencing technology called "HiFi" that can find genetic changes missed by older methods. They plan to sequence the DNA of 500 children with these conditions and 200 of their parents to identify these hidden genetic clues. If a genetic cause is found, it will be confirmed and shared with families by a genetic counselor, if appropriate.

Who could benefit from this research

Good fit: Ideal candidates are children aged 0-11 years old with rare diseases, especially neurodevelopmental disorders, and their parents.

Not a fit: Patients whose conditions are not genetic in origin or who do not have rare neurodevelopmental disorders may not directly benefit from this specific genetic sequencing approach.

Why it matters

Potential benefit: If successful, this work could help families understand the genetic causes of rare diseases and potentially lead to better care or future treatments.

How similar studies have performed: Preliminary data suggests this new HiFi sequencing method can find disease-relevant genetic variants missed by standard approaches, indicating a novel but promising technique.

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.