Gene-editing treatment for phenylketonuria caused by the P281L PAH mutation

LEAD PROJECT 1: PHENYLKETONURIA (PKU)

NIH-funded research Children's Hosp of Philadelphia · NIH-11145249

A lipid nanoparticle-delivered adenine base editor to correct the P281L PAH mutation in people with phenylketonuria.

Quick facts

Grant typeNIH-funded research
Study typeNIH-funded research
Funding institutionChildren's Hosp of Philadelphia NIH-funded
Lab location1 site (Philadelphia, United States)
Project IDNIH-11145249 on NIH RePORTER

What this research studies

If you or your child have PKU with the common P281L PAH mutation, this project is developing a one-time gene-editing treatment delivered to the liver using lipid nanoparticles to fix the faulty gene. The team will use an adenine base editor to change the single DNA letter responsible for the mutation without cutting both strands of DNA. Over five years they plan preclinical testing, filing an IND with the FDA, and then starting a Phase 1/2 clinical trial to check safety and effects on blood phenylalanine. The work is intended to lower lifelong dietary restrictions and reduce reliance on daily enzyme injections.

Who could benefit from this research

Good fit: Ideal candidates are people with classical phenylketonuria who have a confirmed PAH c.842C>T (P281L) mutation and who meet health criteria for an early-phase gene therapy trial.

Not a fit: People with PKU who do not carry the P281L mutation or those with advanced, irreversible neurological damage are unlikely to benefit from this targeted approach.

Why it matters

Potential benefit: If successful, the treatment could durably lower blood phenylalanine and reduce or eliminate the need for a strict low-Phe diet or frequent enzyme injections.

How similar studies have performed: Base editing delivered by lipid nanoparticles has shown promising results in preclinical models and early translational work, but correcting PAH P281L in humans is a novel application with limited clinical precedent.

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.