.) The National Spina Bifida Association documents that over 70,000 people are living with a diagnosis of Spina Bifida in the United States. While the dietary discovery of folic acid has diminished the increase in prevalence of this genetic disorder it is still a growing concern. Not only does it impact physical, intellectual and social development of individuals as they mature it presents with major complex issues during adulthood. Often quality healthcare is difficult to find. In order to improve our understanding of all the healthcare risks of this disorder throughout life a new multisite project has been developed under the auspices of the Centers for Disease Control with a goal of creating a national health care registry for Spina Bifida. The ability to reliably document all the health problems and treatments across life spans will allow us to gain new insights into problems presented with this population and how successful ( or not) certain treatment approaches are. The Colorado Spina Bifida Registry project will follow a minimum of 125 Spina Bifida patients of all ages over a period of 3 years documenting health care issues and treatments. This will be done in conjunction with 7 other sites in other regions of the United States. The combined information collected will provide an ability to discover health trends and promote the development of new studies focused on health care in this population. The National Spina Bifida Association documents that over 70,000 people are living with a diagnosis of Spina Bifida in the United States. While the dietary discovery of folic acid has diminished the increase in prevalence of this genetic disorder it is still a growing concern. Not only does it impact physical, intellectual and social development of individuals as they mature it presents with major complex issues during adulthood. Often quality healthcare is difficult to find. In order to improve our understanding of all the healthcare risks of this disorder throughout life a new multisite project has been developed under the auspices of the Centers for Disease Control with a goal of creating a national health care registry for Spina Bifida. The ability to reliably document all the health problems and treatments across life spans will allow us to gain new insights into problems presented with this population and how successful ( or not) certain treatment approaches are. The Colorado Spina Bifida Registry project will follow a minimum of 125 Spina Bifida patients of all ages over a period of 3 years documenting health care issues and treatments. This will be done in conjunction with 7 other sites in other regions of the United States. The combined information collected will provide an ability to discover health trends and promote the development of new studies focused on health care in this population.
The National Spina Bifida Association documents that over 70,000 people are living with a diagnosis of Spina Bifida in the United States. While the dietary discovery of folic acid has diminished the increase in prevalence of this genetic disorder it is still a growing concern. Not only does it impact physical, intellectual and social development of individuals as they mature it presents with major complex issues during adulthood. Often quality healthcare is difficult to find. In order to improve our understanding of all the healthcare risks of this disorder throughout life a new multisite project has been developed under the auspices of the Centers for Disease Control with a goal of creating a national health care registry for Spina Bifida. The ability to reliably document all the health problems and treatments across life spans will allow us to gain new insights into problems presented with this population and how successful ( or not) certain treatment approaches are. The Colorado Spina Bifida Registry project will follow a minimum of 125 Spina Bifida patients of all ages over a period of 3 years documenting health care issues and treatments. This will be done in conjunction with 7 other sites in other regions of the United States. The combined information collected will provide an ability to discover health trends and promote the development of new studies focused on health care in this population.
