In clinical studies, such as this study on chest wall and spinal disorders, it is difficult to recruit a sufficient number of patients at a single institution to allow for proper statistical power. The purpose of the Chest Wall and Spine Deformity Registry, created by Dr. John Smith of the University of Utah, is to provide an efficient and safe way for doctors access data about patients with chest wall and spinal disorders. Specifically, these patients will be treated for thoracic insufficiency syndrome with a device called vertical expandable prosthetic titanium rib(VEPTR).
The purpose of this study is to develop The Chest Wall and Spine Deformity Registry, which will be able to provide an efficient way to identify and track patients with specific chest wall and/or spinal disorders. The registry allows spine surgeons to participate in retrospective and prospective studies for specific spinal disorders. We also would like to assess the efficacy of treatment on patients with chest wall and spinal disorders.
Who are Eligible?
Patients younger than 8 years of age, with a chest wall or spinal deformity diagnosis and who will be followed at our institution, are eligible to participate in this study and be part of The Chest Wall and Spine Deformity Registry.
Study Procedures/Recruitment:
Eligible patients’ caregivers will be asked if they are willing to participate in this study. After obtaining informed consent, they will be enrolled into the study at the point of contact by the consulting pediatric orthopaedic surgeon and/or a study coordinator. The caregivers will be asked to complete a short questionnaire which will also be completed at a second evaluation, after treatment is completed.
Purpose