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About Spina Bifida Genetics Research Project

The Spina Bifida Genetics Research Project is seeking women of children with Spina Bifida to participate in a study that will help determine the causes of Spina Bifida and lead to its prevention.

Hi, my name is Kristal Louie.  I am a study coordinator for this exciting research project and I am an American and Canadian Board certified Genetic Counselor. 

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Spina Bifida Genetics Research Project

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Study Update - SB Genetics Research Project

Posted by Kristal Louie on Mon, Jun 14, 2010 @ 01:15 AM
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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

 

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Comments

Phew, just got into the study by the skin of my teeth (I was about no.900)The last 100 must have come in fast! Good luck, let's hope all the hardwork sheds some light on spina bifida.
Posted @ Monday, June 14, 2010 3:43 AM by Wendy Garrett
So happy to be part of this research. Our Joseph had severe spinabifida and anencephaly and was stillborn 27 years ago. We were lucky to go on to have 2 healthy daughters one of whom is contemplating pregnancy. This is a cause which will always remain close to my heart.
Posted @ Tuesday, June 15, 2010 3:56 PM by Raewyn
My son was born 14 years ago with spina bifida and I have been searching for answers since. He is confined to a wheelchair and he also has hydrocephalus and double incontinent but he is an amazing son and gives us so much joy. But as a mother I blame myself for all his problems and I just want to know why! I also had a baby girl who would have been worse and we as parents decided to terminate. We then went on to have a healthy boy which was an amazing experience. We need answers for the next generation. My son has an amazing quality of life and has a lot to give, he has been brought up to believe he deserves the very best in life and it was not his fault he was born with problems, it is only his legs that do not work but we feel that it is other people that have the problem with disabled people and makes life harder for him.
Posted @ Saturday, July 17, 2010 6:14 AM by Tracey
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