Over the years, funding for the Rare Genomes Project (RGP) has come from various sources, including federal and non-federal grants and advocacy organizations. We are currently in our last year of the NIH grant that supports sequencing and other aspects of the study, and uncertainties about future funding exist. Therefore, we have made the difficult decision to pause offering enrollment to new family applicants and to focus our resources on currently enrolled families while we secure further funding for the study.
For families that are already enrolled, we are continuing all other study activities, including sequencing, analyzing data, and returning results for diagnostic findings. For new families who want to participate, we are planning on this being a temporary pause, although the duration is unknown at present. We are not closing down the study.
We appreciate your interest in this work and plan on continuing our mission to find genetic diagnoses for families and to contribute to the scientific advancement of genomic diagnosis. Please check back here periodically for new announcements, which will be updated as study changes arise.
Thank you for your interest in RGP. We look forward to continuing to work with families to uncover the genomic basis of rare diseases.
Sincerely,
Heidi L. Rehm, PhD, FACMG
Principal Investigator, Rare Genomes Project
Co-Director, Medical and Population Genetics
Broad Institute of MIT and Harvard