title: The natural history of spina bifida in children pilot project: research protocol.
abstract: BACKGROUND
  Population-based empirical information to inform health care professionals working with children with spina bifida currently is lacking. Spina bifida is a highly complex condition that not only affects mobility but many additional aspects of life. We have developed a pilot project that focuses on a broad range of domains: surgeries, development and learning, nutrition and physical growth, mobility and functioning, general health, and family demographics. Specifically, we will: (1) explore the feasibility of identifying and recruiting participants using different recruitment sources, (2) test a multidisciplinary module to collect the data, (3) determine the utility of different methods of retrieving the data, and (4) summarize descriptive information on living with spina bifida.
  
  
  OBJECTIVE
  The overall objective of the project was to provide information for a future multistate prospective study on the natural history of spina bifida.
  
  
  METHODS
  Families with a child 3 to 6 years of age with a diagnosis of spina bifida were eligible for enrollment. Eligible families were identified through a US population-based tracking system for birth defects and from a local spina bifida clinic.
  
  
  RESULTS
  This is an ongoing project with first results expected in 2013.
  
  
  CONCLUSIONS
  This project, and the planned multistate follow-up project, will provide information both to health care professionals experienced in providing care to patients with spina bifida, and to those who have yet to work with this population. The long-term purpose of this project is to increase the knowledge about growing up with spina bifida and to guide health care practices by prospectively studying a cohort of children born with this condition.
authors.affiliation: Musculoskeletal Sciences, Department of Orthopedics, Clinical Sciences Lund, Lund University, Lund, Sweden. ann.alriksson-schmidt@med.lu.se.
authors.forename: Ann I
authors.initials: AI
authors.lastname: Alriksson-Schmidt
authors.forename: Judy K
authors.initials: JK
authors.lastname: Thibadeau
authors.forename: Mark E
authors.initials: ME
authors.lastname: Swanson
authors.forename: David
authors.initials: D
authors.lastname: Marcus
authors.forename: Kari L
authors.initials: KL
authors.lastname: Carris
authors.forename: Csaba
authors.initials: C
authors.lastname: Siffel
authors.forename: Elisabeth
authors.initials: E
authors.lastname: Ward
keywords: spina bifida, musculoskeletal disorder, health, children, follow-up