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The International Tethered Cord Partnership: Beginnings, process, and status
BACKGROUND: Spina bifida presents a significant cause of childhood morbidity in lower- and middle-income nations. Unfortunately, there is a paucity of literature examining outcomes among children with spina bifida in these countries. The goal of the International Tethered Cord Parternship is twofold...
Autores principales: | , , , , , , , , , , , , , , , |
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Formato: | Texto |
Lenguaje: | English |
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Medknow Publications Pvt Ltd
2011
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Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3086172/ https://www.ncbi.nlm.nih.gov/pubmed/21541204 http://dx.doi.org/10.4103/2152-7806.78239 |
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author | Mulholland, Celene B. Aranda, Guzmán Arredondo, Luis Angel Calgua, Erwin Contreras, Fernando Espinoza, Dulce Maria Gonzalez, Juan Bosco Hoil, Jose A. Komolafe, Edward Lazareff, Jorge A. Liu, Yunhui Soto-Mancilla, Juan Luis Mannucci, Graciela Nan, Bao Portillo, Santiago Zhao, Hongyu |
author_facet | Mulholland, Celene B. Aranda, Guzmán Arredondo, Luis Angel Calgua, Erwin Contreras, Fernando Espinoza, Dulce Maria Gonzalez, Juan Bosco Hoil, Jose A. Komolafe, Edward Lazareff, Jorge A. Liu, Yunhui Soto-Mancilla, Juan Luis Mannucci, Graciela Nan, Bao Portillo, Santiago Zhao, Hongyu |
author_sort | Mulholland, Celene B. |
collection | PubMed |
description | BACKGROUND: Spina bifida presents a significant cause of childhood morbidity in lower- and middle-income nations. Unfortunately, there is a paucity of literature examining outcomes among children with spina bifida in these countries. The goal of the International Tethered Cord Parternship is twofold: (1) to establish an international surveillance database to examine the correlation between time of repair and clinical outcomes in children with spina bifida and tethered cord; and (2) to foster collaboration among international institutions around pediatric neurosurgical concerns. METHODS: Twelve institutions in 7 countries committed to participating in the International Tethered Cord Partnership. A neurosurgeon at each institution will evaluate all children presenting with spina bifida and/or tethered cord using the survey instrument after appropriate consent is obtained. The instrument was developed collaboratively and based on previous measures of motor and sensory function, ambulation, and continence. All institutions who have begun collecting data received appropriate Institutional Review Board approval. All data will be entered into a Health Insurance Portability and Accountability Act (HIPAA) compliant database. In addition, a participant restricted internet forum was created to foster communication and includes non–project-specific communications, such as case and journal article discussion. RESULTS: From October 2010 to December 2010, 82 patients were entered from the various study sites. CONCLUSION: To our knowledge this is the first international pediatric neurosurgical database focused on clinical outcomes and predictors of disease progression. The collaborative nature of the project will not only increase knowledge of spina bifida and tethered cord, but also foster discussion and further collaboration between neurosurgeons internationally. |
format | Text |
id | pubmed-3086172 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2011 |
publisher | Medknow Publications Pvt Ltd |
record_format | MEDLINE/PubMed |
spelling | pubmed-30861722011-05-03 The International Tethered Cord Partnership: Beginnings, process, and status Mulholland, Celene B. Aranda, Guzmán Arredondo, Luis Angel Calgua, Erwin Contreras, Fernando Espinoza, Dulce Maria Gonzalez, Juan Bosco Hoil, Jose A. Komolafe, Edward Lazareff, Jorge A. Liu, Yunhui Soto-Mancilla, Juan Luis Mannucci, Graciela Nan, Bao Portillo, Santiago Zhao, Hongyu Surg Neurol Int Original Article BACKGROUND: Spina bifida presents a significant cause of childhood morbidity in lower- and middle-income nations. Unfortunately, there is a paucity of literature examining outcomes among children with spina bifida in these countries. The goal of the International Tethered Cord Parternship is twofold: (1) to establish an international surveillance database to examine the correlation between time of repair and clinical outcomes in children with spina bifida and tethered cord; and (2) to foster collaboration among international institutions around pediatric neurosurgical concerns. METHODS: Twelve institutions in 7 countries committed to participating in the International Tethered Cord Partnership. A neurosurgeon at each institution will evaluate all children presenting with spina bifida and/or tethered cord using the survey instrument after appropriate consent is obtained. The instrument was developed collaboratively and based on previous measures of motor and sensory function, ambulation, and continence. All institutions who have begun collecting data received appropriate Institutional Review Board approval. All data will be entered into a Health Insurance Portability and Accountability Act (HIPAA) compliant database. In addition, a participant restricted internet forum was created to foster communication and includes non–project-specific communications, such as case and journal article discussion. RESULTS: From October 2010 to December 2010, 82 patients were entered from the various study sites. CONCLUSION: To our knowledge this is the first international pediatric neurosurgical database focused on clinical outcomes and predictors of disease progression. The collaborative nature of the project will not only increase knowledge of spina bifida and tethered cord, but also foster discussion and further collaboration between neurosurgeons internationally. Medknow Publications Pvt Ltd 2011-03-23 /pmc/articles/PMC3086172/ /pubmed/21541204 http://dx.doi.org/10.4103/2152-7806.78239 Text en Copyright: © 2011 Mulholland CB http://creativecommons.org/licenses/by-nc-sa/3.0 This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited. |
spellingShingle | Original Article Mulholland, Celene B. Aranda, Guzmán Arredondo, Luis Angel Calgua, Erwin Contreras, Fernando Espinoza, Dulce Maria Gonzalez, Juan Bosco Hoil, Jose A. Komolafe, Edward Lazareff, Jorge A. Liu, Yunhui Soto-Mancilla, Juan Luis Mannucci, Graciela Nan, Bao Portillo, Santiago Zhao, Hongyu The International Tethered Cord Partnership: Beginnings, process, and status |
title | The International Tethered Cord Partnership: Beginnings, process, and status |
title_full | The International Tethered Cord Partnership: Beginnings, process, and status |
title_fullStr | The International Tethered Cord Partnership: Beginnings, process, and status |
title_full_unstemmed | The International Tethered Cord Partnership: Beginnings, process, and status |
title_short | The International Tethered Cord Partnership: Beginnings, process, and status |
title_sort | international tethered cord partnership: beginnings, process, and status |
topic | Original Article |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3086172/ https://www.ncbi.nlm.nih.gov/pubmed/21541204 http://dx.doi.org/10.4103/2152-7806.78239 |
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