Personalized disease risk for people with rare genetic variants

Predicting individual disease risk for individuals harboring monogenic risk alleles with deep learning

NIH-funded research Icahn School of Medicine at Mount Sinai · NIH-11314475

This project uses advanced computer learning on health and genetic data to estimate which people with rare gene changes are likely to develop disease.

Quick facts

Grant typeR01 grant
Study typeNIH-funded research
Funding institutionIcahn School of Medicine at Mount Sinai NIH-funded
Lab location1 site (New York, United States)
Project IDNIH-11314475 on NIH RePORTER

What this research studies

Researchers will combine genetic test results with health records and other health data to teach deep-learning models how context and non-genetic factors change risk for people with rare variants. The team will use large datasets (including national resources) to find patterns that predict when a genetic risk allele actually leads to disease. The methods will transform those patterns into biologically meaningful signatures that may explain why some people get sick and others do not. Findings will be used to improve how genetic results are interpreted and to guide future clinical tests and counseling.

Who could benefit from this research

Good fit: Ideal candidates are people who have had genetic testing and carry a rare disease-linked variant and who can share their medical records or other health data for research.

Not a fit: People without identified monogenic risk variants or those unable to share health or genetic data are unlikely to receive direct benefit from this project.

Why it matters

Potential benefit: If successful, this work could make genetic test results more useful by giving people clearer, personalized risk estimates and guidance.

How similar studies have performed: Related deep-learning work has shown promise for filling missing health data and improving risk predictions, but applying these methods specifically to rare monogenic variants is relatively new.

Where this research is happening

New York, 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.