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 Kristal Louie on Mon, Jun 14, 2010 @ 01:15 AM
STUDY UPDATE
Due to all the hard work from our WONDERFUL participants, we have reached our goal. We are ready to begin the next phase of the study - performing genetic analysis of the samples in the lab..
We will be closing down the http://www.sbgenetics.org/ survey site at the end of the month. So if you know anyone who has expressed interest in the study but has not completed the survey they have a few weeks left.
For those who have completed the survey, but have not returned their saliva sample/consent, please send in your kits as soon as you can. We will be accepting the kits indefinitely, however depending on where the analysis is, not all of the samples received will be part of our initial analysis they may be used in validation of our results instead.
We are still offering EVERYONE the individual testing at the completion of the study if our analysis supports our theory. So please ensure to provide us with new contact information if you move or obtain a new phone number/email address.
From this point in the study onwards, we are unable to provide details regarding the results of the study until the completed project is published in a scientific journal. Our inability to discuss the results will likely be frustrating for many participants, especially those who are contemplating another pregnancy or have family members contemplating a pregnancy. The process of data analysis and publication can be lengthy as there are high standards for these in the scientific community. We hope to provide updates on where we are in the process to keep communication open with all participants.
You will still be able to reach us at 1.866.575.0110 or at support@sbgenetics.org
Any light that we can shed on the genetics of spina bifida is a direct result of your support. THANK YOU for all the time and effort you guys have invested in this study. We are truly grateful.
Sincerely,
Kristal & the SB Genetics Research Team
www.sbgenetics.org
support@sbgenetics.org