LIVING Study
Thank you for being part of BabySeq and for your continued interest in this next chapter of our research
What is the LIVING Study?
The LIVING Study, or the Long-term Impact and Value of Infant Genomic Sequencing Study, is a follow-up to the BabySeq Project. Researchers are exploring how families use newborn sequencing results and other information 10 years later.
We hope this data will help design future newborn genetic screening programs that support children and families their whole lives.
What is involved?
There are three parts of the LIVING Study. You can choose to participate in some or all of them.
You will be asked to fill out an online survey that takes 30-45 minutes. Questions will ask about your child’s health care and your experience related to the BabySeq Project.
You will be asked to sign a consent form so the LIVING team can use data from your previous BabySeq participation, and from your child’s medical records.
You may also be invited for a 20-minute interview about how you used the information from BabySeq for your family’s healthcare.
Your Choices & Privacy
Taking part in this study is completely voluntary, and choosing not to participate will not affect your or your child’s medical care now or in the future.
You can participate in the LIVING Study even if you don’t remember being part of the BabySeq Project.
You can choose whether to allow the study team to link your BabySeq information and your child’s relevant medical records. You may still complete the LIVING Study survey even if you say no to sharing this information.
One or two parents from each family can complete the survey. Each parent who completes the survey will receive a $50 electronic gift card as a thank you. This electronic gift card can be used at a variety of online stores.
If you are invited for a complete the interview, you will receive an additional $50 electronic gift card per family.
Compensation
Questions or Help?
The study is led by Kurt Christensen, PhD, at the Harvard Pilgrim Health Care Institute, working closely with the BabySeq Project team at Brigham and Women’s Hospital.
If you have questions about the study, you can call Dr. Christensen at (617) 867-4524.
For logistical questions about the survey, consent, interviews, or gift cards, please contact the project manager, Bethany Zettler, at bzettler@bwh.harvard.edu; bwhlivingstudy@mgb.org; or (617) 264-5884.