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.

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

From Wheelchair to Cane: Elective Transtibial Amputations in a Patient with Spina Bifida.
 

Author(s): Amanda Mayo, David Berbrayer

Journal: Am J Phys Med Rehabil. 2015 Nov;94(11):e107-10.

 

Spina bifida is associated with foot deformities, which may lead to foot ulcers, osteomyelitis, and limb amputation. Calcanectomy and Symes amputations have been reported successful in spina bifida. There is lack of evidence for transtibial amputations. This case describes a 27-yr-old ...

Last Updated: 22 Oct 2015

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Rehabilitation outcomes in persons with spina bifida: A randomised controlled trial.
 

Author(s): Fary Khan, Bhasker Amatya, Louisa Ng, Mary Galea

Journal: J Rehabil Med. 2015 Sep;47(8):734-40.

 

To assess the effectiveness of an interdisciplinary ambulatory rehabilitation programme for persons with spina bifida in an Australian community cohort.

Last Updated: 3 Sep 2015

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Attention in spina bifida myelomeningocele: Relations with brain volume and integrity.
 

Author(s): Paulina A Kulesz, Amery Treble-Barna, Victoria J Williams, Jenifer Juranek, Paul T Cirino, Maureen Dennis, Jack M Fletcher

Journal:

 

This study investigated the relations of tectal volume and superior parietal cortex, as well as alterations in tectocortical white matter connectivity, with the orienting and executive control attention networks in individuals with spina bifida myelomeningocele (SBM). Probabilistic ...

Last Updated: 24 Jun 2015

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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:

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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[Maternal-fetal surgery for spina bifida: future perspectives].
 

Author(s): L Joyeux, G E Chalouhi, Y Ville, E Sapin

Journal: J Gynecol Obstet Biol Reprod (Paris). 2014 Jun;43(6):443-54.

 

Open spina bifida or myelomeningocele (MMC) is a frequent congenital abnormality (450 cases per year in France) associated with high morbidity. Immediate postnatal surgery is aimed at covering the exposed spinal cord, preventing infection, treating hydrocephalus with a ventricular ...

Last Updated: 19 Jun 2014

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Symptoms, Diagnosis, and Treatment

There are currently no related results available in Genetics Home Reference.

There are currently no related results available in GeneReviews.

 
 
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Clinical Trial Information This information is provided by ClinicalTrials.gov

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: 26 May 2015

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Last Updated: 25 Jan 2016

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