Long-read genetic sequencing to clarify unclear genetic diagnoses

Utilizing long-read sequencing to resolve inconclusive diagnoses and uncertainty in genetic testing

NIH-funded research Children's Hosp of Philadelphia · NIH-11306686

This project uses a newer kind of DNA sequencing to try to find clear genetic answers for children and families who got inconclusive or partial genetic test results.

Quick facts

Grant typeR01 grant
Study typeNIH-funded research
Funding institutionChildren's Hosp of Philadelphia NIH-funded
Lab location1 site (Philadelphia, United States)
Project IDNIH-11306686 on NIH RePORTER

What this research studies

We will apply third-generation long-read sequencing to a group of children with suspected inherited (Mendelian) disorders who previously had inconclusive exome or genome results. This includes cases with a single variant in a recessive gene, two variants with unknown parental origin or phase, and variants of uncertain significance or imprinting concerns. We will compare the long-read results to the prior short-read testing to see if uncertain findings can be resolved. The work will be done through the clinical lab and bioinformatics team at Children’s Hospital of Philadelphia, with sequencing, analysis, and interpretation to inform diagnoses.

Who could benefit from this research

Good fit: Children (pediatric patients) with suspected inherited disorders who previously received inconclusive or partial results from exome or genome sequencing are the best fit for this work.

Not a fit: People whose condition is not suspected to be genetic or who already have a clear, confirmed genetic diagnosis are unlikely to benefit from this sequencing approach.

Why it matters

Potential benefit: If successful, this could provide definitive genetic diagnoses for more children, reducing uncertainty and helping guide treatment, monitoring, and family planning.

How similar studies have performed: Previous research has shown long-read sequencing can uncover variants missed by short-read methods and has solved some previously inconclusive cases, but it remains an emerging approach that is not yet routine in all clinics.

Where this research is happening

Philadelphia, 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.