Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2013 Jan 25;2(1):e2.
doi: 10.2196/resprot.2209.

The natural history of spina bifida in children pilot project: research protocol

Ann I Alriksson-Schmidt  1 , Judy K Thibadeau, Mark E Swanson, David Marcus, Kari L Carris, Csaba Siffel, Elisabeth Ward
Affiliations

The natural history of spina bifida in children pilot project: research protocol

Ann I Alriksson-Schmidt et al. JMIR Res Protoc. .

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.

Keywords: spina bifida, musculoskeletal disorder, health, children, follow-up.

PubMed Disclaimer

Conflict of interest statement

Conflicts of Interest: None declared.

Figures

Figure 1
Figure 1
Recruitment Scheme.
See this image and copyright information in PMC

References

    1. Bowman RM, McLone DG, Grant JA, Tomita T, Ito JA. Spina bifida outcome: a 25-year prospective. Pediatr Neurosurg. 2001 Mar;34(3):114–20. - PubMed
    1. Wong LY, Paulozzi LJ. Survival of infants with spina bifida: a population study, 1979-94. Paediatr Perinat Epidemiol. 2001 Oct;15(4):374–8. - PubMed
    1. Shin M, Besser LM, Siffel C, Kucik JE, Shaw GM, Lu C, Correa A, Congenital Anomaly Multistate Prevalence and Survival Collaborative Prevalence of spina bifida among children and adolescents in 10 regions in the United States. Pediatrics. 2010 Aug;126(2):274–9. doi: 10.1542/peds.2009-2084. http://pediatrics.aappublications.org/cgi/pmidlookup?view=long&pmid=2062... - DOI - PubMed
    1. Botto LD, Lisi A, Robert-Gnansia E, Erickson JD, Vollset SE, Mastroiacovo P, Botting B, Cocchi G, de Vigan C, de Walle H, Feijoo M, Irgens LM, McDonnell B, Merlob P, Ritvanen A, Scarano G, Siffel C, Metneki J, Stoll C, Smithells R, Goujard J. International retrospective cohort study of neural tube defects in relation to folic acid recommendations: are the recommendations working? BMJ. 2005 Mar 12;330(7491):571. doi: 10.1136/bmj.38336.664352.82. http://europepmc.org/abstract/MED/15722368 - DOI - PMC - PubMed
    1. Bowman RM, McLone DG. Neurosurgical management of spina bifida: research issues. Dev Disabil Res Rev. 2010;16(1):82–7. doi: 10.1002/ddrr.100. - DOI - PubMed

LinkOut - more resources