Project FIND-OUT has enrolled over 65 families so far, helping to provide answers and resources for children. Additionally, Project FIND-OUT strives to improve current understanding of the symptoms that might be related to a genetic disorder and continues to work towards advancing policies regarding access to genetic testing services.
“This was the best thing that could have happened for us and our daughter given the circumstances. I couldn’t imagine not having this information or having to pay a high amount to know specifics. Her results were rather minor which gave us a sense of hope and peace and a way to move forward and know that she can hopefully live a well, fulfilled life. We are in a support group on Facebook that has been very helpful. Thank you all for this opportunity to find out more about our sweet girl.”
“Our experience was great. It was a very fast process. We are thankful for Project FIND-OUT.”
“I think it is such a valuable service and shouldn’t be such a barrier to get when your child is experiencing delays.”
“We were able to get genetic testing quickly and with ease without the barrier of a provider saying no. It also ruled things out we had been concerned about. Additionally, it led us to find our ‘carrier’ status for any future pregnancies which we likely wouldn’t have done otherwise without an expanded screening. It will not change anything as we weren’t matching carriers, but still good info to know!”
“I’m grateful you were able to do the best testing available right now. [Before Project FIND-OUT] we got the referral for genetics easily based on our case, but the local genetic labs have up to a year wait times and it was kind of urgent since my baby’s so young. We went through a private place but it wasn’t covered by insurance. Insurance rejected it and they weren’t very helpful.”
Pierobon Mays, G., Terala, A., Baxter, A., Schmidt, K., Rountree, E., Liebers, B., Berger, S., Bichell, TJ., Project FIND-OUT: Protocol and pilot study for whole genome sequencing in symptomatic infants; (Abstract #2353). Poster Presented at the Annual Meeting of The American Society of Human Genetics, Denver, CO. November 6, 2024.
P405: Project FIND-OUT (Fast Infant Neurogenetic Diagnosis via Outpatient Testing): Utilization of healthcare claims data to inform protocol design
Bichell, Terry Jo et al. Genetics in Medicine Open, Volume 1, Issue 1, 100441
The Project FIND-OUT core collaborator group includes the following organizations:
Stay up to date with the latest news
Copyright 2023. All Rights are Reserved. Project FIND-OUT