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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Association for Spina Bifida & Hydrocephalus

The Association for Spina Bifida and Hydrocephalus works with people with spina bifida and/or hydrocephalus, their families and caregivers to promote individual choice, control and quality of life.

Last Updated: 24 Nov 2009

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CNS Foundation

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

Last Updated: 12 Oct 2013

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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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Association for Spina Bifida & Hydrocephalus

The Association for Spina Bifida and Hydrocephalus works with people with spina bifida and/or hydrocephalus, their families and caregivers to promote individual choice, control and quality of life.

http://www.asbah.org

Last Updated: 24 Nov 2009

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CNS Foundation

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

http://www.cnsfoundation.org

Last Updated: 12 Oct 2013

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

The longest faun tail forming dreadlocks with underlying spina bifida occulta.
 

Author(s): Balvinder Kaur Brar, Bharat Bhushan Mahajan, Jyotisterna Mittal

Journal:

 

Spina bifida is a developmental anomaly characterized by defective closure of the bony encasement of the spinal cord through which the spinal cord and meninges may or may not protrude. We report a rare case of a very long faun tail, which was in the form of a 20 inch long tail originating ...

Last Updated: 11 Sep 2013

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Mutations in planar cell polarity gene SCRIB are associated with spina bifida.
 

Author(s): Yunping Lei, Huiping Zhu, Cody Duhon, Wei Yang, M Elizabeth Ross, Gary M Shaw, Richard H Finnell

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Neural tube defects (NTDs) (OMIM #182940) including anencephaly, spina bifida and craniorachischisis, are severe congenital malformations that affect 0.5-1 in 1,000 live births in the United States, with varying prevalence around the world. Mutations in planar cell polarity (PCP) ...

Last Updated: 7 Aug 2013

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Risk of spina bifida and maternal cigarette, alcohol, and coffee use during the first month of pregnancy.
 

Author(s): Corey M Benedum, Mahsa M Yazdy, Allen A Mitchell, Martha M Werler

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This study was conducted to assess the association between the risks of spina bifida (SB) in relation to cigarette, alcohol, and caffeine consumption by women during the first month of pregnancy. Between 1988-2012, this multi-center case-control study interviewed mothers of 776 SB ...

Last Updated: 6 Aug 2013

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

Variation in definitions of urinary tract infections in spina bifida patients: a systematic review.
 

Author(s): Ramiro Jose Madden-Fuentes, Erin Rebekah McNamara, Jessica Catherine Lloyd, John Samuel Wiener, Jonathan Charles Routh, Patrick Casey Seed, Sherry Sedberry Ross

Journal: Pediatrics. 2013 Jul;132(1):132-9.

 

Urinary tract infections (UTIs) are a common source of morbidity among children with spina bifida (SB) and are a frequently reported outcome in studies of this patient population. However, the criteria for a diagnosis of UTI are often not stated. We evaluated the literature on SB ...

Last Updated: 26 Aug 2013

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Osteoporosis in paediatric patients with spina bifida.
 

Author(s): Humberto Marreiros, Humberto Filipe Marreiros, Clara Loff, Eulalia Calado

Journal: J Spinal Cord Med. 2012 Jan;35(1):9-21.

 

The prevalence and morbidity associated with osteoporosis and fractures in patients with spina bifida (SB) highlight the importance of osteoporosis prevention and treatment in early childhood; however, the issue has received little attention. The method for the selection of appropriate ...

Last Updated: 14 Feb 2012

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A family perspective: how this product can inform and empower families of youth with spina bifida.
 

Author(s): Grayson N Holmbeck, Ann I Alriksson-Schmidt, Melissa H Bellin, Cecily Betz, Katie A Devine

Journal: Pediatr. Clin. North Am.. 2010 Aug;57(4):919-34.

 

This article focuses on how the Life Course Model Web site can help family members build on the strengths of individuals with spina bifida and address areas of difficulty. A developmental perspective is adopted, which maintains that the Life Course Model Web site is useful at all ...

Last Updated: 4 Oct 2010

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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

Psychosocial Adjustment of Adolescents With Spina Bifida
 

Status: Recruiting

Condition Summary: Spina Bifida

 

Last Updated: 30 Apr 2009

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Self-esteem and Neuro-urological Follow-up in Patients With Spina Bifida or Spinal Cord Injury
 

Status: Recruiting

Condition Summary: Spina Bifida Aperta; Acquired Traumatic Spinal Cord Injury

 

Last Updated: 2 Apr 2014

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Outcome of Fetal Spina Bifida
 

Status: Recruiting

Condition Summary: Pregnancy; Fetal and Neonatal Health

 

Last Updated: 22 Aug 2011

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