The Spina Bifida Genetics Research Project - UPDATE

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We’re pleased to announce that we have completed enrollment in the Spina Bifida Genetics Research Project.
 
Thanks to your help and the support of the advocacy community around the world, we have received completed enrollment questionnaires and saliva samples from over 1,000 women and their Spina Bifida affected children.  This is an extraordinary achievement that reflects an enormous amount of hard work and the commitment of a passionate community.  We are incredibly grateful.
 
When we began this process in 2009, we could not have imagined what could be accomplished by people who care.  Our study participants came to us from 48 states plus the District of Columbia, 11 provinces in Canada and 18 countries.  They found us through direct communication from Spina Bifida advocacy groups, clinical treatment centers, word of mouth, advertising in newsletters, booths at picnics, internet search and FaceBook.   It has been simply amazing.
 
We’re now in the midst of analyzing the data we have collected.  We expect a minimum of two months of data analysis, followed by the preparation of a manuscript that will be submitted to a medical journal.  Once the results are submitted for peer review, we have to wait for several months, during which the reviewers confirm the validity of our findings and ask follow-up questions.  During the preparation and review process, we are not allowed to discuss the results.
 
We are in the process of closing down the study enrollment site and will direct anyone who visits the site to our blog.  We plan to use the blog to give people updates (since they can sign up for blog alerts) and to keep communications lines open with study participants who might have questions.  

 

Challenge Air 2010

Challenge Air for Kids & Friends, a national children’s nonprofit organization, is recruiting volunteers, pilots and special needs children between the ages of 7-17 for its 5th Annual Kansas City, MO “Fly Day” event to be held Saturday, September 11th at Charles B. Wheeler Airport, hosted by Executive Beechcraft. Highlights of the day include: an educational ground school, a 30-minute flight, face painting, clowns, cool static aircraft, lunch, service animals and much more!

To register as a day-of volunteer, volunteer pilot or as a participant (first come, first served and free for all children with special needs) log on to: www.challengeair.org. For more information contact Cindy Miller at (214) 351-3353 or email cindy@challengeair.org.

Download Flier

Register Online at: www.challengeair.org

 

SBKC on Facebook

You can now follow SBKC on Facebook. Become a Fan today.

Spina Bifida Kansas City on Facebook

 

Spina Bifida Online Research Study

Do you have a child (ages 10 – 29) with Spina Bifida? If so, researchers from Kennedy Krieger Institute invite you to participate in an online research study! We are interested in learning more about how and when children with Spina Bifida learn to manage their medical self-care and home responsibilities. The study does not require a clinic visit and can be completed using a computer in your home or elsewhere. The online survey usually takes about 15-20 minutes to complete and is anonymous, so no personal information such as names, social security numbers, or IP (computer) addresses will be collected. Please be aware that if your child is over the age of 18, we will ask you to obtain your child’s consent. If you have questions about this study, Dr. Zabel can be reached at zabela@kennedykrieger.org

If you are interested in participating in this study, we invite you to go to www.psychdata.com and enter survey # 128186. We thank you very much for being willing to help us and other individuals with Spina Bifida by participating in this study!