Spina Bifida Association

of Washington State

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formerly, the Evergreen Spina Bifida Association

Research

Over time members of the Spina Bifida Association of Washington State have been invited to participate in many national research projects that have the possibility of improving the lives of people with Spina Bifida and promoting its prevention.  The current projects are listed below and you are encouraged to investigate and volunteer if you qualify.

http://www.sbgenetics.org/ This study is to determine if genetic variations in folic acid metabolism account for an increased risk of having a baby with Spina Bifida and possible develop a test that can identify women at risk before conception!
Online Research Study www.kennedykrieger.org This study is of Spina Bifida children (ages 10-29) to learn more about how and when children with Spina Bifida learn to manage their medical self-care and home responsibilities.  

Management of Myelomeningocele Study MOMS is a research study to compare two approaches of babies with Spina Bifida: surgery before birth (prenatal or fetal surgery) and surgery after birth (postnatal surgery)
The Rehabilitation Research and Training Center for Health and Wellness for People with Disabilities (RRTC) at Oregon Health & Science University (OHSU) is conducting a study of adult males with a disability about how to measure the health and quality of life of people with disabilities.

Study Completed