Information For Participants
The goal of NCGENES is to generate evidence about strategies for including genomic sequencing into clinical practice. Our hope is that what we learn through the NCGENES research will help make genomic sequencing, like exome sequencing, more available in the future to patients who could benefit from it. This work would not be possible without the participation of North Carolina families in NCGENES.
Who can participate in NCGENES?
The NCGENES research team has partnered with pediatric specialty clinics at three North Carolina Hospitals:
- UNC Healthcare (pediatric genetics and pediatric neurology)
- Mission Health (Fullerton Genetics Clinic), and
- Eastern Carolina University Health Services (pediatric genetics and pediatric neurology)
Families may be invited to participate in NCGENES if their child is being seen in one of these clinics for a new patient appointment. Not all families being seen in these clinics can be invited. If there are more families eligible to participate than can be enrolled in any given time period, a computer program determines which families are invited.
In NCGENES, both the child and his or her parent or guardian are participants. Each must meet certain eligibility criteria.
|Parent-participants must be:||Child-participants must be:|
|Parent-participants must not be:||Child participants must not:|