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

The enteric nervous system and the musculature of the colon are altered in patients with spina bifida and spinal cord injury.
 

Author(s): Marjanne den Braber-Ymker, Martin Lammens, Michel J A M van Putten, Iris D Nagtegaal

Journal: Virchows Arch.. 2017 Feb;470(2):175-184.

 

Neurogenic bowel dysfunction occurs in a large percentage of adult patients with spina bifida (SB) and spinal cord injury (SCI), significantly affecting their quality of life. Although bowel motility is autonomously regulated by the enteric nervous system (ENS), disruption of the ...

Last Updated: 7 Jan 2017

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Recurrent fetal syndromic spina bifida associated with 3q26.1-qter duplication and 5p13.33-pter deletion due to familial balanced rearrangement.
 

Author(s): Egle Preiksaitiene, Eglė Benušienė, Zivile Ciuladaite, Vytautas Šliužas, Violeta Mikštienė, Vaidutis Kučinskas

Journal: Taiwan J Obstet Gynecol. 2016 Jun;55(3):410-4.

 

Neural tube defects belong to the second most common group of congenital anomalies, after heart defects, which can be diagnosed by prenatal ultrasonography. Rarely, neural tube defects can be associated with chromosomal abnormalities, including full and partial aneuploidies. We report ...

Last Updated: 26 Jun 2016

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Factors associated with the timeliness of postnatal surgical repair of spina bifida.
 

Author(s): Elizabeth Radcliff, Cynthia H Cassell, Sarah B Laditka, Judy K Thibadeau, Jane Correia, Scott D Grosse, Russell S Kirby

Journal: Childs Nerv Syst. 2016 Aug;32(8):1479-87.

 

Clinical guidelines recommend repair of open spina bifida (SB) prenatally or within the first days of an infant's life. We examined maternal, infant, and health care system factors associated with time-to-repair among infants with postnatal repair.

Last Updated: 30 Jul 2016

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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 31 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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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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The diagnostic features of spina bifida: the role of ultrasound.
 

Author(s): Beverly G Coleman, Jill E Langer, Steven C Horii

Journal: Fetal. Diagn. Ther.. 2015 ;37(3):179-96.

 

Myelomeningocele (MMC) is one of the most devastating, nonlethal congenital anomalies worldwide. The live birth prevalence of MMC changed dramatically in the 1980s with the introduction of maternal serum screening and the widespread use of prenatal ultrasound imaging. The high-resolution ...

Last Updated: 2 Apr 2015

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Symptoms, Diagnosis, and Treatment

There are currently no related results available in GeneReviews.

 
 
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Clinical Trial Information This information is provided by ClinicalTrials.gov

Last Updated: 16 Aug 2016

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Incidence of Pregnancies and Births With Spina Bifida in Denmark in 2008-2014
 

Status: Recruiting

Condition Summary: Spina Bifida

 

Last Updated: 7 Mar 2016

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