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