title: The International Tethered Cord Partnership: Beginnings, process, and status.
abstract: 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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: David Geffen School of Medicine at UCLA, 10833 Le Conte Avenue, Los Angeles, CA 90024, USA.
authors.forename: Celene B
authors.initials: CB
authors.lastname: Mulholland
authors.forename: Guzmán
authors.initials: G
authors.lastname: Aranda
authors.forename: Luis Angel
authors.initials: LA
authors.lastname: Arredondo
authors.forename: Erwin
authors.initials: E
authors.lastname: Calgua
authors.forename: Fernando
authors.initials: F
authors.lastname: Contreras
authors.forename: Dulce Maria
authors.initials: DM
authors.lastname: Espinoza
authors.forename: Juan Bosco
authors.initials: JB
authors.lastname: Gonzalez
authors.forename: Jose A
authors.initials: JA
authors.lastname: Hoil
authors.forename: Edward
authors.initials: E
authors.lastname: Komolafe
authors.forename: Jorge A
authors.initials: JA
authors.lastname: Lazareff
authors.forename: Yunhui
authors.initials: Y
authors.lastname: Liu
authors.forename: Juan Luis
authors.initials: JL
authors.lastname: Soto-Mancilla
authors.forename: Graciela
authors.initials: G
authors.lastname: Mannucci
authors.forename: Bao
authors.initials: B
authors.lastname: Nan
authors.forename: Santiago
authors.initials: S
authors.lastname: Portillo
authors.forename: Hongyu
authors.initials: H
authors.lastname: Zhao