The Vermont Oxford Rady Children’s Genomic Network conducts educational activities to advance knowledge and competency in genomic medicine in newborn care. VON and Rady Children’s Institute for Genomic Medicine (RCIGM) are partnering to launch a biorepository to help centers implement Rapid Precision Medicine to diagnose and guide care for critically ill infants.

Eligible participating centers will have access to rapid Whole Genome Sequences for up to 10 patient/parental trios and detailed reports and support from RCIGM at no cost.

Through this biorepository, we aim to:

• Provide access to rapid Whole Genome Sequencing at no cost to participating centers to diagnose and guide clinical management of infants in Level III and IV NICUs;
• Further the understanding of specific neonatal genetic diseases, treatment responses, and outcomes;
• Identify new genomic abnormalities and their phenotypic presentations.

Level III and IV NICUs that are VON Core members are eligible to participate in the biorepository.

To sign up or for more information, please contact Michele Feddock, research program manager at RCIGM, at mfeddock@rchsd.org.

What are the benefits of participation in the biorepository?
Eligible participating centers will have the opportunity to order rapid Whole Genome Sequences for up to 10 patient/parental trios at no cost to diagnose and guide clinical management of infants with rare and critical conditions. Collected information will further understanding of neonatal genetic diseases, treatment responses, and outcomes.

The education available through Vermont Oxford Rady Children’s Genomic Network activities supports implementation and utilization genomic medicine. Centers participating in the biorepository are encouraged to actively participate in the learning network.

What centers are eligible to participate in the biorepository?
Centers must be members of Vermont Oxford Network and provide Level III or IV NICU care to participate in the biorepository. Centers are encouraged to join the Vermont Oxford Rady Children’s Genomic Network to take full advantage of all the benefits of membership. Only centers in the United States will be able to participate in the biorepository at this time.

What is the cost to participate in the biorepository?
There are no additional membership fees to participate in the biorepository. There is a one-time fee for Western IRB submission of $1,189. Note: additional template consents (for example, a consent for a parent who is not yet emancipated) will be charged an additional one-time fee of $513. There will be some cost for sample kits and shipping (outbound/inbound). These costs will vary based on site location (typical total costs are less than $100/sample).

What else do I need to know about the IRB process?
Access the Connexus portal system for IRB submissions here and reference IRB number 20202515 when making the initial submission.

How many rapid whole genome tests are available to each participating center?
Eligible sites may order up to 10 sets of patient/parental genomes per site for the initial 12 months of Biorepository activities. Centers will receive CAP/CLIA certified clinical reports and support from RCIGM experts to make the best use of the rapid Whole Genomic Sequences.

When will our center be able to start participating in the biorepository?
After signing up for the biorepository, centers will need to submit an IRB. Please refer to the webinar, workflow, and readiness checklist here. Rapid Whole Genome Sequencing is available now from RCIGM for eligible participating sites.

How do we sign up for the biorepository?
To sign up or for more information, please contact Michele Feddock, research program manager at RCIGM, at mfeddock@rchsd.org.

Back to the Genomic Network