The natural history of spina bifida in children pilot project : Research protocol
(2013) In JMIR Research Protocols 2(1).- 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)... (More)
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.
(Less)
- author
- Alriksson-Schmidt, Ann I. LU ; Thibadeau, Judy K. ; Swanson, Mark E. ; Marcus, David ; Carris, Kari L. ; Siffel, Csaba and Ward, Elisabeth
- organization
- publishing date
- 2013
- type
- Contribution to journal
- publication status
- published
- subject
- keywords
- Children, Follow-up, Health, Musculoskeletal disorder, Spina bifida
- in
- JMIR Research Protocols
- volume
- 2
- issue
- 1
- article number
- e2
- publisher
- JMIR Publications Inc.
- external identifiers
-
- wos:000315113200003
- pmid:23612276
- scopus:85097571182
- ISSN
- 1929-0748
- DOI
- 10.2196/resprot.2209
- language
- English
- LU publication?
- yes
- id
- e394865d-9cdd-4ae3-ba9d-1ebff9e157bd (old id 3671389)
- date added to LUP
- 2016-04-01 10:01:11
- date last changed
- 2022-03-19 08:37:37
@article{e394865d-9cdd-4ae3-ba9d-1ebff9e157bd,
abstract = {{<p>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.</p>}},
author = {{Alriksson-Schmidt, Ann I. and Thibadeau, Judy K. and Swanson, Mark E. and Marcus, David and Carris, Kari L. and Siffel, Csaba and Ward, Elisabeth}},
issn = {{1929-0748}},
keywords = {{Children; Follow-up; Health; Musculoskeletal disorder; Spina bifida}},
language = {{eng}},
number = {{1}},
publisher = {{JMIR Publications Inc.}},
series = {{JMIR Research Protocols}},
title = {{The natural history of spina bifida in children pilot project : Research protocol}},
url = {{https://lup.lub.lu.se/search/files/1482627/4057715.pdf}},
doi = {{10.2196/resprot.2209}},
volume = {{2}},
year = {{2013}},
}