We participate in research for Spina Bifida through the CDC Spina Bifida Registry. The Colorado Spina Bifida Registry is hosted by Children’s Hospital Colorado. If you are not on the Registry and want to be included please contact SpinaDonnaC@gmail.com.
Spina Bifida Adult Survey
The first Adult with Spina Bifida Survey will be released this year. Health Care Guidelines are developed at this Congress. Health Care Guidelines are extremely important. They are the Guidelines Clinicians will use to treat Spina Bifida over the next several years.
Spina Bifida affects 166,000 Americans in the United States. Each year, about 1,500 babies are born with Spina Bifida. Approximately 65,000 babies born in Colorado each year are monitored for birth defects. Each year, 3,250 (5%) of all births in Colorado have a major birth defect.Babies born with a birth defect are more likely to die before their first birthday, compared to babies born without a birth defect.
Hispanic women have the highest rate of having a child affected by Spina Bifida compared to non-Hispanic white and non-Hispanic black women. The prevalence of Spina Bifida was determined by estimating the total number of pregnancies affected by Spina Bifida compared to the total number of live births. Results showed:
Hispanic 3.80 per 10,000 live births
Non-Hispanic black or African-American 2.73 per 10,000 live births
Non-Hispanic white 3.09 per 10,000 live births
Resources
Please let the Resources below know you were referred by the Spina Bifida Association of Colorado.
We partner with Children’s Hospital Colorado and their Spinal Defects Clinic to provide the best care possible. Children’s Hospital Colorado collects data for the CDC’s Spina Bifida Registry. They support our educational Programs.
Chanda Plan Foundation
Chanda Plan Foundation is a collaborative partner working with Spina Bifida Association of Colorado to better serve those with Spina Bifida. Chanda Plan Foundation’s mission is to improve the quality of life for persons with physical disabilities by providing direct access to integrative therapies to treat symptoms of spinal cord injuries, muscular dystrophy, cerebral palsy, multiple sclerosis, spina bifida and brain injuries. The Chanda Plan provides access to integrative treatments via Location-Based and Provider-Based facilities along the front range and across the nation. Such therapies include acupuncture, massage, chiropractic care, adaptive exercise and adaptive yoga. The results of this integrated approach are reduced pain and need for pain medication, lessened time spent at medical visits, and increased hours engaged in community and work.
Services are provided at no cost to our individuals with Spina Bifida!
Applications must be submitted and approved. Applications are reviewed every 3 months.
We are developing a collaborative partnership with Project Walk, a business that works with spinal cord difficulties, rehabilitation, and health. Project Walk is looking at how an increase in Brain Derived Neurotrophic Factor (BDNF), through exercise, can assist in reorganization of the nervous system.
Resources Coming
Please check back soon for additional resources and collaborative partnerships we are currently developing.
Spina Bifida manifests itself as a number of conditions. It is unlike any other disability. Our advocacy efforts promote research to improve the lives of the 166,000 Americans who live with Spina Bifida. The goals of Spina Bifida research is to develop better treatment, trainted treatment teams, a better understanding of causes and new ways to prevent Spina Bifida.
Clinical Trials Research
There are four basic types of clinical trials.
Treatment, or Therapeutic trials, test new treatments, new combinations of drugs or new approaches to surgery.
Prevention trials look for better ways to prevent diseases and disorders. Prevention trials may include medicines, vaccines, minerals, vitamins, or lifestyle changes.
Screening, or Diagnostic trials, test the best way to detect certain diseases or health conditions.
Quality of Life, or Supportive Care trials, explore ways to improve comfort and the quality of life for individuals with a chronic condition or illness.
Vanderbilt University Medical Center is holding Clinical Trials on:
Vanderbilt is offering groundbreaking fetal surgery to repair myelomeningocele spina bifida while still in the womb. It is believed that these babies have better outcomes than babies who have surgery after birth.
The positive outcomes of this research include a decreased risk of death or need for shunt placement in the brain by the age of 12 months, plus improved mental and motor function.
Welcome!
Resources & Research
Spina Bifida Registry
We participate in research for Spina Bifida through the CDC Spina Bifida Registry. The Colorado Spina Bifida Registry is hosted by Children’s Hospital Colorado. If you are not on the Registry and want to be included please contact SpinaDonnaC@gmail.com.
Spina Bifida Adult Survey
The first Adult with Spina Bifida Survey will be released this year. Health Care Guidelines are developed at this Congress. Health Care Guidelines are extremely important. They are the Guidelines Clinicians will use to treat Spina Bifida over the next several years.
To take the Adult Survey, click the link: https://www.research.net/r/sba_adult_survey
Statistics
Spina Bifida affects 166,000 Americans in the United States. Each year, about 1,500 babies are born with Spina Bifida. Approximately 65,000 babies born in Colorado each year are monitored for birth defects. Each year, 3,250 (5%) of all births in Colorado have a major birth defect.Babies born with a birth defect are more likely to die before their first birthday, compared to babies born without a birth defect.
Hispanic women have the highest rate of having a child affected by Spina Bifida compared to non-Hispanic white and non-Hispanic black women. The prevalence of Spina Bifida was determined by estimating the total number of pregnancies affected by Spina Bifida compared to the total number of live births. Results showed:
Hispanic 3.80 per 10,000 live births
Non-Hispanic black or African-American 2.73 per 10,000 live births
Non-Hispanic white 3.09 per 10,000 live births
Resources
Please let the Resources below know you were referred by the Spina Bifida Association of Colorado.
Children’s Hospital Colorado Spinal Defects Clinic
We partner with Children’s Hospital Colorado and their Spinal Defects Clinic to provide the best care possible. Children’s Hospital Colorado collects data for the CDC’s Spina Bifida Registry. They support our educational Programs.
Chanda Plan Foundation
Chanda Plan Foundation is a collaborative partner working with Spina Bifida Association of Colorado to better serve those with Spina Bifida. Chanda Plan Foundation’s mission is to improve the quality of life for persons with physical disabilities by providing direct access to integrative therapies to treat symptoms of spinal cord injuries, muscular dystrophy, cerebral palsy, multiple sclerosis, spina bifida and brain injuries. The Chanda Plan provides access to integrative treatments via Location-Based and Provider-Based facilities along the front range and across the nation. Such therapies include acupuncture, massage, chiropractic care, adaptive exercise and adaptive yoga. The results of this integrated approach are reduced pain and need for pain medication, lessened time spent at medical visits, and increased hours engaged in community and work.
Services are provided at no cost to our individuals with Spina Bifida!
Applications must be submitted and approved. Applications are reviewed every 3 months.
Next Due Date Next Review Date
June 23, 2016 July 21, 2016
September 22, 2016 October 20, 2016
Please contact SpinaDonnaCO@gmail.com for information on the Chanda Plan Foundation.
Project Walk
We are developing a collaborative partnership with Project Walk, a business that works with spinal cord difficulties, rehabilitation, and health. Project Walk is looking at how an increase in Brain Derived Neurotrophic Factor (BDNF), through exercise, can assist in reorganization of the nervous system.
Resources Coming
Please check back soon for additional resources and collaborative partnerships we are currently developing.
Information Sheets
Information Sheets on Spina Bifida can be found on the National Spina Bifida Association website through the following link: http://spinabifidaassociation.org/info-sheets/
Research
Spina Bifida manifests itself as a number of conditions. It is unlike any other disability. Our advocacy efforts promote research to improve the lives of the 166,000 Americans who live with Spina Bifida. The goals of Spina Bifida research is to develop better treatment, trainted treatment teams, a better understanding of causes and new ways to prevent Spina Bifida.
Clinical Trials Research
There are four basic types of clinical trials.
For information on Spina Bifida Research around the World click the link: http://www.nhs.uk/Conditions/Clinical-trials/Pages...
A few Clinical Trials in the United States include:
Management of Myelomeningocele Study (MOMS)
Sponsored by:
The George Washington University Biostatistics Center
Psychosocial Adjustment of Adolescents With Spina Bifida
Sponsored by:
Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)
Study of Genetic Risk Factors for Spina Bifida and Anencephaly
Sponsored by:
Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)
For links to these Clinical Trials, click the link: https://clinicaltrials.gov/ct2/results?term=spina+...
Fetal Surgery for Repair of Spina Bifida
Sponsored by:
Vanderbilt University Medical Center is holding Clinical Trials on:
Vanderbilt is offering groundbreaking fetal surgery to repair myelomeningocele spina bifida while still in the womb. It is believed that these babies have better outcomes than babies who have surgery after birth.
The positive outcomes of this research include a decreased risk of death or need for shunt placement in the brain by the age of 12 months, plus improved mental and motor function.
For more information, click:
http://www.childrenshospital.vanderbilt.org/interior.php?mid=8205&gclid=CjwKEAjw652_BRDfkebVrdOGkDISJAD0Q2Rup2HctF85abv7KZEV6Jrsq4V9G-4c4H9KuP3HED39XRoC4Xnw_wcB
http://www.nhs.uk/Conditions/Clinical-trials/Pages/clinical-trial.aspx
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