Spina bifida

Common Name(s)

Spina bifida

Spina bifida is a type of neural tube defect in which the bones of the spinal column do not close completely around the developing nerves of the spinal cord during the development of the embryo. As a result, part of the spinal cord may stick out through an opening in the spine, leading to permanent nerve damage. Children born with spina bifida often have a fluid-filled sac on their back covered by skin. If the sac contains part of the spinal cord and its protective covering, it is known as a myelomeningocele; if it does not, it is known as a meningocele. The signs and symptoms range from mild to severe (depending on the location and extent of spinal cord involvement) and can include a loss of feeling below the level of the opening; weakness or paralysis of the feet or legs; problems with bladder and bowel control; hydrocephalus; and learning problems. With surgery and other forms of treatment, many people with spina bifida live into adulthood. There is also a milder form of the condition called spina bifida occulta.
 

Advocacy and Support Organizations

 

Condition Specific Organizations

Following organizations serve the condition "Spina bifida" for support, advocacy or research.

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Pediatric Brain Foundation

Pediatric Brain Foundation's Mission is Three-fold: 1. Expedite scientific research to find treatments and cures for ALL of the more than 14 million children, in the U.S. alone, living with some form of neurological disorder 2. Provide families and health care professionals with up-to-date information and resources on the latest discoveries in pediatric neurology 3. Educate the public and public officials on the critical importance of funding pediatric neurological research

Last Updated: 22 Apr 2015

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Spina Bifida Association

The mission of the Spina Bifida Association of America is to promote the prevention of spina bifida and to enhance the lives of all affected.

Last Updated: 28 Dec 2012

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Spina Bifida Association of America

Our mission is to promote the prevention of spina bifida and to enhance the lives of all affected.

Last Updated: 29 Apr 2014

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Spina Bifida Resource

Spina Bifida Resource's mission is to promote the prevention of spina bifida and its secondary conditions and to enhance the health and well-being of those affected.

Last Updated: 15 Nov 2012

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Spina Bifida Resource Network

The mission of the Spina Bifida Resource Network is to empower the lives of people with spina bifida and promote the prevention of spina bifida through advocacy, education, collaboration, public awareness, research and programs.

Last Updated: 27 Dec 2012

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The Arc of East Central Iowa

The Arc of East Central Iowa empowers people with intellectual and related disabilities to engage in lifelong opportunities to live, learn, work and play with dignity, freedom and full inclusion in their communities.

Last Updated: 11 Apr 2013

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United Spinal Association

United Spinal Association’s mission is to improve the quality of life of all people living with spinal cord injuries and disorders (SCI/D). United Spinal never loses sight of our founders' grassroots efforts to provide a voice to the disability community and to transform the public’s perception of wheelchair users. Now the largest non-profit organization dedicated to helping people living with SCI/D, United Spinal is committed to providing active-lifestyle information, peer support and advocacy that empowers individuals to achieve their highest potential in all facets of life.

Last Updated: 20 Feb 2013

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General Support Organizations

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How do you compare to others with this condition?

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Advocacy and Support Organizations

 

Condition Specific Organizations

Following organizations serve the condition "Spina bifida" for support, advocacy or research.

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Pediatric Brain Foundation

Pediatric Brain Foundation's Mission is Three-fold: 1. Expedite scientific research to find treatments and cures for ALL of the more than 14 million children, in the U.S. alone, living with some form of neurological disorder 2. Provide families and health care professionals with up-to-date information and resources on the latest discoveries in pediatric neurology 3. Educate the public and public officials on the critical importance of funding pediatric neurological research

http://www.pediatricbrainfoundation.org

Last Updated: 22 Apr 2015

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Spina Bifida Association

The mission of the Spina Bifida Association of America is to promote the prevention of spina bifida and to enhance the lives of all affected.

http://www.spinabifidaassociation.org

Last Updated: 28 Dec 2012

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Spina Bifida Association of America

Our mission is to promote the prevention of spina bifida and to enhance the lives of all affected.

http://www.sbaa.org

Last Updated: 29 Apr 2014

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Spina Bifida Resource

Spina Bifida Resource's mission is to promote the prevention of spina bifida and its secondary conditions and to enhance the health and well-being of those affected.

http://spinabifidaresource.weebly.com/

Last Updated: 15 Nov 2012

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Spina Bifida Resource Network

The mission of the Spina Bifida Resource Network is to empower the lives of people with spina bifida and promote the prevention of spina bifida through advocacy, education, collaboration, public awareness, research and programs.

http://www.thesbrn.org

Last Updated: 27 Dec 2012

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The Arc of East Central Iowa

The Arc of East Central Iowa empowers people with intellectual and related disabilities to engage in lifelong opportunities to live, learn, work and play with dignity, freedom and full inclusion in their communities.

http://www.arceci.org

Last Updated: 11 Apr 2013

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United Spinal Association

United Spinal Association’s mission is to improve the quality of life of all people living with spinal cord injuries and disorders (SCI/D). United Spinal never loses sight of our founders' grassroots efforts to provide a voice to the disability community and to transform the public’s perception of wheelchair users. Now the largest non-profit organization dedicated to helping people living with SCI/D, United Spinal is committed to providing active-lifestyle information, peer support and advocacy that empowers individuals to achieve their highest potential in all facets of life.

http://www.unitedspinal.org

Last Updated: 20 Feb 2013

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General Support Organizations

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General Resources

SB University

Videotaped presentations on numerous topics related to SB and Hydrocephalus. Available free of charge 24/7

Updated 28 Dec 2012

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Scientific Literature

Articles from the PubMed Database

Research articles describe the outcome of a single study. They are the published results of original research.
The terms "Spina bifida" returned 503 free, full-text research articles on human participants. First 3 results:

Ultrasound in Prenatal Diagnostics and Its Impact on the Epidemiology of Spina Bifida in a National Cohort from Denmark with a Comparison to Sweden.
 

Author(s): Charlotte Rosenkrantz Bodin, Mikkel Mylius Rasmussen, Ann Tabor, Lena Westbom, Eleonor Tiblad, Charlotte Kvist Ekelund, Camilla Bernt Wulff, Ida Vogel, Olav Bjørn Petersen

Journal:

 

The aim of this study was to assess the incidence, the prenatal detection rate by ultrasound, and the pregnancy outcome of spina bifida (SB) in Denmark (DK) in 2008-2015 and to compare results to national data from Sweden.

Last Updated: 31 Dec 1969

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Spina bifida cystica and severe congenital bilateral talipes equinovarus in one twin of a monoamniotic pair: a case report.
 

Author(s): Benjamin Momo Kadia, Desmond Aroke, Frank-Leonel Tianyi, Ndemazie Nkafu Bechem, Christian Akem Dimala

Journal:

 

Spina bifida and congenital talipes equinovarus (CTEV) are common congenital malformations which may occur together and increase morbidity. Monozygous twins are particularly at risk of these malformations and discordance in one type of malformation is typical. The occurrence of both ...

Last Updated: 31 Dec 1969

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Wheelchair Shuttle Test for Assessing Aerobic Fitness in Youth With Spina Bifida: Validity and Reliability.
 

Author(s): Manon A T Bloemen, Janke F de Groot, Frank J G Backx, Joyce Benner, Cas L J J Kruitwagen, Tim Takken

Journal: Phys Ther. 2017 10;97(10):1020-1029.

 

Testing aerobic fitness in youth is important because of expected relationships with health.

Last Updated: 31 Dec 1969

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Reviews from the PubMed Database

Review articles summarize what is currently known about a disease. They discuss research previously published by others.
The terms "Spina bifida" returned 35 free, full-text review articles on human participants. First 3 results:

Care for Adults with Spina Bifida: Current State and Future Directions.
 

Author(s): Shubhra Mukherjee, Jacqueline Pasulka

Journal: Top Spinal Cord Inj Rehabil. 2017 ;23(2):155-167.

 

The care for adults with spina bifida is an important area to study. As increasing numbers of patients with spina bifida survive into adulthood, they expect to thrive and receive the best possible care into adulthood to maintain their health. Understanding the health needs in this ...

Last Updated: 31 Dec 1969

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Genomic approaches to the assessment of human spina bifida risk.
 

Author(s): M Elizabeth Ross, Christopher E Mason, Richard H Finnell

Journal: Birth Defects Res. 2017 Jan;109(2):120-128.

 

Structural birth defects are a leading cause of mortality and morbidity in children world-wide, affecting as much as 6% of all live births. Among these conditions, neural tube defects (NTDs), including spina bifida and anencephaly, arise from a combination of complex gene and environment ...

Last Updated: 31 Dec 1969

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Fetoscopic versus Open Repair for Spina Bifida Aperta: A Systematic Review of Outcomes.
 

Author(s): Luc Joyeux, Alexander C Engels, Francesca M Russo, Julio Jimenez, Tim Van Mieghem, Paolo De Coppi, Frank Van Calenbergh, Jan Deprest

Journal: Fetal. Diagn. Ther.. 2016 ;39(3):161-71.

 

To compare outcomes of fetoscopic spina bifida aperta repair (FSBAR) with the results of the open approach (OSBAR) as in the Management Of Myelomeningocele Study (MOMS).

Last Updated: 31 Dec 1969

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Clinical Trial Information This information is provided by ClinicalTrials.gov

Spina Bifida in Daily Life: an Exploratory Study
 

Status: Not yet recruiting

Condition Summary: Spina Bifida

 

Last Updated: 8 May 2017

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Last Updated: 27 Aug 2018

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