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.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.

How I Do It: Myelomeningocele in Bolivia

“… In Bolivia as in the rest of Latin America socio economical factors weight on the prevention and treatment of MMCL We do not have statistical data but it seems that in Bolivia we have a lower incidence of NTD than in Nicaragua and Guatemala where they see 10-15 cases per month in Nicaragua and 15-20 in Guatemala[ 12 ] Preventive use of folic acid is not fully complied in Bolivia. In South America in a study of 2810 women it was observed that only 14.8% ingested vitamin supplements with folic acid during pregnancy, and only 1% did it correctly.…”

“…In Bolivia as in the rest of Latin America socio economical factors weight on the prevention and treatment of MMCL We do not have statistical data but it seems that in Bolivia we have a lower incidence of NTD than in Nicaragua and Guatemala where they see 10-15 cases per month in Nicaragua and 15-20 in Guatemala[ 12 ]…”

“…Otra buena iniciativa ha sido la conformación del ITCP[ 12 ] que incluye a 7 países en vías de desarrollo (Argentina, China, Guatemala, México, Nicaragua, Nigeria y Panamá), que de manera conjunta trabajan, buscando al menos dos objetivos:[ 1 ] establecer una base de datos de vigilancia internacional para examinar la correlación entre el tiempo de la corrección y los resultados clínicos en niños con espina bífida y médula anclada, y[ 2 ] impulsar la colaboración entre las instituciones internacionales sobre asuntos relacionados con la neurocirugía pediátrica. Para ello, 12 hospitales elegidos en estos países incluyeron en un banco de datos a todos los pacientes con espina bífida y médula anclada entre 0 y 15 años, y que tuvieron un seguimiento médico anual, por un periodo de 5 años.…”

“…Por ejemplo, estudios realizados en Nicaragua y Guatemala, llegan a reportar mensualmente entre 10-15 enfermos y 15-20 casos de espina bífida, respectivamente. [ 12 ] El uso preventivo del ácido fólico en edad fértil no se cumple en Bolivia como lo establece una norma legal desde 1996. Faltan más control y difusión en la población sobre las ventajas que ofrece la fortificación de la harina y cereales con ácido fólico.…”

“…Por ejemplo, estudios realizados en Nicaragua y Guatemala, llegan a reportar mensualmente entre 10-15 enfermos y 15-20 casos de espina bífida, respectivamente. [ 12 ]…”