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 510 free, full-text research articles on human participants. First 3 results:

Surgical treatment for lumbar hyperlordosis after resection of a spinal lipoma associated with spina bifida: A case report.
 

Author(s): Tatsuya Sato, Ikuho Yonezawa, Shingo Onda, Kei Yoshikawa, Hiromitsu Takano, Yukitoshi Shimamura, Takatoshi Okuda, Kazuo Kaneko

Journal: Medicine (Baltimore). 2017 Sep;96(36):e7895.

 

A hyperlordosis deformity of the lumbar spine is relatively rare, and surgical treatment has not been comprehensively addressed. In this case report, we describe the clinical presentation, surgical treatment, and medium-term follow-up of a patient presenting with a progressive lumbar ...

Last Updated: 8 Sep 2017

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Prevalence and time trends of spina bifida in fourteen cities located in the Liaoning province of northeast China, 2006-2015.
 

Author(s): Gen Ba, Qi-Jun Wu, Yan-Ling Chen, Yan-Hong Huang, Ting-Ting Gong

Journal: Oncotarget. 2017 Mar;8(12):18943-18948.

 

The present study sought to assess the time trends of spina bifida on the basis of cases identified by the Liaoning Birth Defects Registry in 14 cities from 2006 to 2015. We calculated the prevalence of spina bifida, percent and average change of time trends, and contribution rates ...

Last Updated: 2 Feb 2017

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Long-time sickness absence among parents of pre-school children with cerebral palsy, spina bifida and down syndrome: a longitudinal study.
 

Author(s): Idunn Brekke, Elena Albertini Früh, Lisbeth Gravdal Kvarme, Henrik Holmstrøm

Journal:

 

Taking care of a child with special needs can be draining and difficult and require a lot of parental time and resources. The present study investigated the long-term sickness absence of parents who have children with spina bifida, cerebral palsy and Down syndrome compared to that ...

Last Updated: 19 Jan 2017

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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 32 free, full-text review articles on human participants. First 3 results:

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: 21 Apr 2016

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Procedure-related complications of open vs endoscopic fetal surgery for treatment of spina bifida in an era of intrauterine myelomeningocele repair: systematic review and meta-analysis.
 

Author(s): E Araujo Júnior, A J Eggink, J van den Dobbelsteen, W P Martins, D Oepkes

Journal: Ultrasound Obstet Gynecol. 2016 Aug;48(2):151-60.

 

To assess and compare the rate of procedure-related complications after intrauterine treatment of spina bifida by endoscopic surgery and by open fetal surgery.

Last Updated: 3 Aug 2016

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Uronephrological outcomes of patients with neural tube defects. Does a spina bifida clinic make a difference?
 

Author(s): Hamdan H Al-Hazmi, Mahmoud S Trbay, Abdulmonem B Gomha, Ahmad A Elderwy, Amenah J Khatab, Khalid F Neel

Journal: Saudi Med J. 2014 Dec;35 Suppl 1():S64-7.

 

To review the uronephrological outcomes of myelomeningocele (MMC) patients attending a Spina Bifida Clinic.

Last Updated: 31 Dec 2014

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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: 29 May 2017

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