Spina Bifida Association of Northwest Ohio

Below are some research opportunities for children and adults with Spina Bifida.

This information is provided to educational opportunities only and should not be considered an endorsement by the Spina Bifida Association of Northwest Ohio.  Interested parties should contact the research institutions and speak with their trusted advisers before participating.

SB genetics is enrolling mothers in a study to determine if genetic variations in folic acid metabolism account for an increased risk of having a child with Spina Bifida. From the results of the study, it may be possible to develop a test that can identify at-risk women prior to conception. They could then be treated by their physicians the same way as women who have had a child with Spina Bifida - with high dose folic acid supplementation.

Participants in the study are asked to complete a brief online survey and provide a DNA sample using a simple at-home saliva collection kit. Once the project is complete, participants will receive a complimentary test for a personalized genetic report. For more information and to enroll in the SB Genetics Research Project, please go to the sbc genetics website and select ENROLL. The website and survey are available in both English and Spanish. Participants also may choose to receive a $10 Target gift card or to have SB Genetics donate $10 to the Spina Bifida Association.

The SB Genetics Project includes scientists from UC Berkeley, Stanford University, UC San Francisco, Children's Hospital Oakland Research Institute and VitaPath Genetics.

JOHNS HOPKINS UNIVERSITY

Do you have a child (ages 10 - 29) with Spina Bifida? If so, researchers from the 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 responsibilites.

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 18, we will ask you to obtain your child's consent.

To participate in the study, please:

1. Go to www.psychdata.com
2. Enter survey #128186

If you have questions about this study, please email Dr. Zabel.

Protocol Number:NA_00002759

University of
Michigan Studies

The Developmental Neuromotor Control Lab, formerly known as the Motor Development Lab, in the Division of Kinesiology at the University of Michigan has been doing research for about 6 years with infants born with spina bifida. Infants born with spina bifida have a lesion to their spinal cord that critically affects the sensorimotor function of their lower trunk and legs. Little is known about their early sensorimotor development and little therapeutic intervention occurs throughout much of the first postnatal year.

Both researchers and theory agree that the initiation of steps is strongly impacted by sensory input. Infants with spina bifida, by virtue of their spinal cord lesion, have reduced sensory input from receptors and nerves peripheral to the lesion. The purpose of the DNC lab study is to determine the effect of enhancing sensory input to the systems of infants with spina bifida on the motor output of their legs during the first half and second half of the first year of life. During the studies, different sensory experiences are provided to the children and their responses to the stimuli recorded.

Current Studies:

1. For kids 5-12 years old that like to walk
2. Infants with Spina Bifida

For more information about these studies, please contact:

Cheryl Drenning RN at 734-615-1494 or  at csdren@umich.edu .

Please visit the Developmental Neuromotor Control Laboratory for more information and update on research projects.