Posted by Kristal Louie on Mon, Aug 16, 2010 @ 07:35 PM
On behalf of everyone involved in the Spina Bifida Genetics Research Project, we thank you again for your participation in this very important study. Due to your support, we enrolled more than 1,000 mothers of children with Spina Bifida. This great achievement would not have been possible without the support of this incredibly caring community.
Our study site is now closed and we are currently analyzing the DNA we have received. Once we complete the analysis, we will submit the results for publication in a peer-reviewed journal, so that we can share our findings with the medical and scientific community. This process can take some time, and during the review period, it is not possible for us to provide any information about the research. We hope that if the results are informative, they will appear in a journal by the end of the year.
If we are able to develop a test, we will send you a voucher for a personal DNA test. This test will be available through your doctor and will provide you with information on how your genes influence your body’s use of folic acid.
Thank you again for all your help
www.sbgenetics.org
support@sbgenetics.org
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
Posted by Bruce Cohen on Tue, Nov 10, 2009 @ 01:11 PM
Our Spina Bifida Genetics Study now has participants from 46 states and 7 countries -- Australia, Canada, El Salvador, England, Ireland, Mexico and Scotland. Thanks to our campaign on the Internet and help from Spina Bifida advocacy groups, we're reaching out to women around the world who want to help us find a way to prevent Spina Bifida.
In Europe, we've been able to contract with a professional forwarding service, so study participants just have to mail their sample kit to an address in England. The service consolidates the shipments and deals with the customs procedures.
Outside of Europe, we're either sending our participants envelopes with international postage or reimbursing them for the postage. Since the customs requirements are minimal, we hope that won't be too much trouble. If anyone has any suggestions to make this easier, please write to support@sbgenetics.org with your ideas.
All of us are excited and very grateful for all the help we're getting here in the U.S. and around the world. It's great to be working with a community that cares.
As always, if you can help us get the word out, please take a moment to send the study link -- www.sbgenetics.org -- to anyone you know who has a child with Spina Bifida. With your help, we can make a difference.
--Bruce
www.sbgenetics.org
support@sbgenetics.org