Young people with spina bifida who live into adulthood might experience depression, obesity, social isolation, and lack of independence.
The objective of this survey is to determine how frequently these conditions occur and factors associated with them. A detailed survey was administered to individuals 12 through 31 years of age with spina bifida living in Arkansas, and their parents.
The survey for this study included questions about physical factors (such as lesion level, shunt complications, incontinence, and mobility) and environmental factors (such as school experiences and parent-child interactions). The study also looked at sexuality, tobacco and alcohol use, and illicit drug use.
Living with Spina Bifida is a challenge.
Spina bifida is a complex, disabling condition that has a tremendous impact on individuals and families, from difficulty accessing care, to incurring high health care costs associated with frequent surgeries and hospitalizations. CDC research and programs improve the quality of life and encourage full participation at every age for those with spina bifida.
Other study projects:
Spina Bifida Multi-site Study
The goal of the National Spina Bifida Patient Registry is to improve the quality of care provided to people living with spina bifida, and to build a foundation for future research. Data gathered from children and adults who attend spina bifida clinics across the country will document care received, and outcomes of that care. CDC is the only organization in the United States designing the infrastructure and conducting the multi-site clinical research to build a better road map for living with spina bifida.
The goal of the National Spina Bifida Patient Registry is to improve the quality of care provided to people living with spina bifida, and to build a foundation for future research. Data gathered from children and adults who attend spina bifida clinics across the country will document care received, and outcomes of that care. CDC is the only organization in the United States designing the infrastructure and conducting the multi-site clinical research to build a better road map for living with spina bifida.
Spina Bifida End-Stage Renal Disease Project
The Spina Bifida End-Stage Renal Disease Project is the first to look at the connection between spina bifida and kidney failure. Using data from the United States Renal Data System, which includes medical claims and transplant records, CDC researchers will determine the characteristics of people with spina bifida who have end-stage renal disease. CDC researchers will determine whether people with spina bifida are more or less likely to experience health problems and die from kidney failure than people who are not affected by spina bifida. This project is part of CDC’s work focusing on adults with spina bifida.
The Spina Bifida End-Stage Renal Disease Project is the first to look at the connection between spina bifida and kidney failure. Using data from the United States Renal Data System, which includes medical claims and transplant records, CDC researchers will determine the characteristics of people with spina bifida who have end-stage renal disease. CDC researchers will determine whether people with spina bifida are more or less likely to experience health problems and die from kidney failure than people who are not affected by spina bifida. This project is part of CDC’s work focusing on adults with spina bifida.
Spina Bifida in Young Children in Arizona and Utah
This project will include all children with spina bifida who were born in Arizona and Utah, not just those who visit a spina bifida clinic, and will help CDC determine if similar research methods can be used for other rare conditions. CDC researchers will analyze information on children 3 through 6 years of age living in Arizona and Utah. This project will focus on child development and school readiness.
This project will include all children with spina bifida who were born in Arizona and Utah, not just those who visit a spina bifida clinic, and will help CDC determine if similar research methods can be used for other rare conditions. CDC researchers will analyze information on children 3 through 6 years of age living in Arizona and Utah. This project will focus on child development and school readiness.
Arkansas Study of Spina Bifida among Young People
Young people with spina bifida who live into adulthood might experience depression, obesity, social isolation, and lack of independence. The objective of this survey is to determine how frequently these conditions occur and factors associated with them. A detailed survey was administered to individuals 12 through 31 years of age with spina bifida living in Arkansas, and their parents. The survey for this study included questions about physical factors (such as lesion level, shunt complications, incontinence, and mobility) and environmental factors (such as school experiences and parent-child interactions). The study also looked at sexuality, tobacco and alcohol use, and illicit drug use.
Young people with spina bifida who live into adulthood might experience depression, obesity, social isolation, and lack of independence. The objective of this survey is to determine how frequently these conditions occur and factors associated with them. A detailed survey was administered to individuals 12 through 31 years of age with spina bifida living in Arkansas, and their parents. The survey for this study included questions about physical factors (such as lesion level, shunt complications, incontinence, and mobility) and environmental factors (such as school experiences and parent-child interactions). The study also looked at sexuality, tobacco and alcohol use, and illicit drug use.
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