Using data science to find rare diseases in health records

Integrative data science approaches for rare disease discovery in health records

NIH-funded research Icahn School of Medicine at Mount Sinai · NIH-10839995

This study is working to make it easier and faster to diagnose rare diseases by looking at a lot of health records and genetic information, so that people can get the right help sooner, especially those whose conditions might not be noticed until they are adults.

Quick facts

Grant typeNIH-funded research
Study typeNIH-funded research
Funding institutionIcahn School of Medicine at Mount Sinai NIH-funded
Lab location1 site (New York, United States)
Project IDNIH-10839995 on NIH RePORTER

What this research studies

This research aims to improve the diagnosis of rare diseases by analyzing large health record datasets. It combines electronic health records with genomic data and uses advanced techniques like machine learning and natural language processing to identify patterns and characteristics of these diseases. By integrating various data sources, the project seeks to enhance the accuracy and speed of diagnosing conditions that often go undetected until adulthood. This approach could lead to better patient outcomes by facilitating timely and precise diagnoses.

Who could benefit from this research

Good fit: Ideal candidates for this research are adults who may have undiagnosed rare genetic disorders or have experienced delays in diagnosis.

Not a fit: Patients with common diseases or those whose conditions are already well understood may not benefit from this research.

Why it matters

Potential benefit: If successful, this research could lead to earlier and more accurate diagnoses for patients with rare diseases, improving their quality of life.

How similar studies have performed: Previous research has shown promise in using data science techniques for disease identification, indicating that this approach could be effective.

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.
Conditions rare genetic disorderrare genetic disease
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.