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The natural history...
The natural history of spina bifida in children pilot project : Research protocol
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- Alriksson-Schmidt, Ann I. (författare)
- Lund University,Lunds universitet,Ortopedi, Lund,Sektion III,Institutionen för kliniska vetenskaper, Lund,Medicinska fakulteten,Orthopaedics (Lund),Section III,Department of Clinical Sciences, Lund,Faculty of Medicine
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- Thibadeau, Judy K. (författare)
- Centers For Disease Control And Prevention
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- Swanson, Mark E. (författare)
- Centers For Disease Control And Prevention
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- Marcus, David (författare)
- Children's Healthcare of Atlanta
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- Carris, Kari L. (författare)
- University of Chicago
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- Siffel, Csaba (författare)
- Centers For Disease Control And Prevention
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- Ward, Elisabeth (författare)
- Centers For Disease Control And Prevention
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(creator_code:org_t)
- 2013-01-25
- 2013
- Engelska.
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Ingår i: JMIR Research Protocols. - : JMIR Publications Inc.. - 1929-0748. ; 2:1
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Abstract
Ämnesord
Stäng
- 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.
Ämnesord
- MEDICIN OCH HÄLSOVETENSKAP -- Hälsovetenskap -- Hälso- och sjukvårdsorganisation, hälsopolitik och hälsoekonomi (hsv//swe)
- MEDICAL AND HEALTH SCIENCES -- Health Sciences -- Health Care Service and Management, Health Policy and Services and Health Economy (hsv//eng)
Nyckelord
- Children
- Follow-up
- Health
- Musculoskeletal disorder
- Spina bifida
Publikations- och innehållstyp
- art (ämneskategori)
- ref (ämneskategori)
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