For those of you who have already contributed to our research study, we would appreciate it if you would take the time to complete the survey found at the link below. This will be extremely beneficial to the study for two reasons:
1) It will aid us in assuring our family files are complete, and...
2) ...patterns between genetic findings and individual’s changes over time will provide a wealth of information for further study.
Any information will be added to your confidential file and held in the same regard as previously gathered data.
Familial Idiopathic Scoliosis
Our reasons for studying the genetics of idiopathic scoliosis (IS) are numerous. First, IS has a high prevalence within the general population. In severe cases, an individual might have long term problems related to the physical deformity: possible surgery, lung problems, back pain, and late degenerative disease of the back. Screening programs in schools have improved earlier diagnosis, but are expensive and are not in use everywhere in the country. If the gene(s) were identified, screening and diagnosis could be made simpler. Secondarily, not all curves progress to a severe degree. Identification of individuals who are at risk for curve progression is important. We cannot tell at the moment who these individuals are. Identification of the gene may help us decide who is likely to progress. Currently, the only early treatment for scoliosis that may be effective is a back brace. The placement of a young adolescent into a back brace can have a profound effect on his/her life and self-esteem. For curves of significant degree, the only treatment is spinal fusion which has a major impact in spinal mobility. Identification of a gene may shed light on which individuals will likely respond to a brace and which will need surgery.
Most importantly, the location of the gene(s) for IS would aid in the development of a test for accurate, early diagnosis of IS. If we could diagnose scoliosis early or before the curve appears, we may be able to develop methods to prevent the scoliosis itself. The continuation of this study has been recently approved by the Colorado Multiple Institutional Review Board and had previous approval by the Johns Hopkins University Joint Committee on Clinical Investigation since July 1995.