Supporting Parents
The NICUnet was established to further our understanding of the genetic factors that may lead to neonatal death and to help bereaved parents obtain closure and plan for future pregnancies. By participating as a parent, you also join our efforts in working together with the the hope of one day preventing other parents from experiencing the loss of a child.
What to expect
when participating
Consenting
The neonatologist will explain the NICUnet study and give you the option of participating. If you decide to consent, a small sample of blood will be taken from your baby. The neonatologist caring for your baby will also give you the option of consenting to an autopsy - you may decline this.
Providing Samples
Optionally, you may give a blood sample as well, as this may help the research team identify genetic differences between the baby and the mum and dad which may help explain the death
Obtaining Results
The chance that the research team find a genetic explanation for your baby's death is about 30%. If a cause is found and confirmed, you will be contacted by an accredited genetic counselor working with GeneDx, who will explain the findings to you and give advice on next steps.
Frequently asked questions
We welcome participants to contact our principal investigators with questions at any time.
Is there a fee to participate or to receive a genetic testing result?
There is no fee to participate.
How long until I can find out about the genetic testing results?
The chance that the research team find a genetic explanation for your baby's death is about 30%. In such cases, it takes from one to three months for us to generate and return results. If you would like to get an update, please contact the Principal Investigator at your hospital.
What happens with a positive result?
A geneticist from GeneDx will schedule a telehealth visit to review results with you.
What happens with a negative result?
This is a research study, so we don't generate reports for negative results. For information on negative results, please contact the Principal Investigator at your hospital.
Will genetic abnormalities unlikely to be related to the newborn’s death be reported?
No, we will not screen for unrelated genetic conditions (e.g., BRCA1/2, Huntington's).
What privacy protections are in place?
All our analyses are done on de-identified data. Industry standard encryption mechanisms are used to store and access de-identified data. All patient information is stored in secure locations or on HIPAA-compliant servers.
Will participation or the results impact my ability to obtain healthcare or insurance?
This study will not impact your ability to receive healthcare. It is illegal for health insurance and employers to discriminate using genetics under a federal law called “GINA”. Although life, disability, and long-term care insurance may use genetic information, they are unlikely to use genetic information from this study because we will not share your genetic information with these companies, the results we are returning are unlikely to change your risk profile, and we have extensive security in place to prevent a data leak.
Parent Resources
GeneDx
At GeneDx, we remain committed to finding genetic diseases using sound science and state-of-the-art tools.
Mount Sinai
Mount Sinai Health System provides bereavement services for families experiencing losses during pregnancy, infancy, or childhood.
Hand to Hold
Hand to Hold® provides personalized support before, during and after a NICU stay to help ensure all NICU families thrive.
Molly Bears
Molly Bears exists to create a positive and comforting impact for families enduring any form of infant loss.
