Posted by Bruce Cohen on Thu, Mar 11, 2010 @ 11:23 AM
We began our groundbreaking study with high hopes of doing something never done before – recruit 1,000 women and their children who have Spina Bifida, to participate in a worldwide effort to understand the genetics of folate metabolism and the risks of Spina Bifida. When we started, we weren’t sure how long it would take, or how hard it would be.
Thanks to a truly extraordinary effort from people in 47 states and 17 countries and with the enthusiastic support of the Spina Bifida community, we’re delighted to let you know that we are nearly there. More than 1,000 women have signed up on our secure web site and more than 700 women and their children have completed the enrollment process by sending in saliva samples with consent forms. That is amazing.
Many have asked when we will complete the study. Some participants mail back their saliva kits after a few days, and others take several weeks. Recently we received a sample sent out 5 months ago! Regardless of how long it takes, we are grateful that the kits are sent in. We are very proud of all the hard work done because we understand how busy everyone is, and we can see the finish line just ahead. However we’re not done until we have 1,000 consented samples. Because we cannot predict how many participants will complete the process and how long everyone will take, we are continuing to enroll new participants and send reminders (we hope not too many!).
Once we have reached our ambitious goal, full analysis of the data should take about two months. Then the results will be submitted to a scientific journal for peer review. In another blog we’ll talk about the analysis and how studies like this are reviewed by experts before the results are published. The publication process can be frustrating for participants because we are not allowed to discuss the results during the reveiw period. We hope everyone understands that scientific research takes time, and with something as important as this, it’s essential that our work is done carefully and consistent with high quality medical research.
So, if you’ve done the survey on the web site, but haven’t had a minute to send in your kits, please do so as soon as you can. If you have any questions, or need a swab kit, don’t hesitate to contact us at 1.866.575.0110 or support@sbgenetics.org.
Most importantly, a big and heartfelt THANK YOU to everyone who has taken us this far.
www.sbgenetics.org
support@sbgenetics.org