Observational Study
researchers track health outcomes over time in groups of participants to look for patterns that help us better understand a disease.
The Rare Genomes Project
The Rare Genomes Project
Brief Description
The Rare Genomes Project aims to increase rare and undiagnosed families’ access to genomic research, empowering patients to directly accelerate the pace of rare disease diagnosis. This project was designed to be a direct partnership between researchers and patients, so we can better understand their conditions.
Trial Physician / Study Coordinator
The Rare Genomes Team
Email Phone 617-714-7395Site Name
The Broad Institute
Main Street, Cambridge, MA, USA
Sponsor
The Broad Institute
Observational Study
researchers track health outcomes over time in groups of participants to look for patterns that help us better understand a disease.
The Rare Genomes Project
The Rare Genomes Project
Brief Description
The Rare Genomes Project aims to increase rare and undiagnosed families’ access to genomic research, empowering patients to directly accelerate the pace of rare disease diagnosis. This project was designed to be a direct partnership between researchers and patients, so we can better understand their conditions.
Trial is for people with
Rare and genetically undiagnosed conditions
Study Goal
The Rare Genomes Project hopes to enable patients with undiagnosed, suspected genetic conditions to participate in genomic research regardless of where they live, to engage participants as partners in the research process, and to turn genomic data into clinically meaningful answers for families.
What is involved for the Patient?
Patients will complete a health history survey, send a sample of DNA, and talk to their physician and the study team.
About the drug or intervention
Learn more at https://raregenomes.org/home