The Connecticut Children's Medical Center (CCMC), a free standing, academic children's hospital and medical center based in Hartford, CT and the Shriner's Hospital for Children of Springfield, MA, propose a plan to participate in the national Spina Bifida Registry feasibility study, sponsored by the United States Centers for Disease Control and Prevention. To the efforts of this national collaborative, CCMC will bring 12 years of experience providing comprehensive, multidisciplinary specialty care to patients and families with spina bifida, a well developed investigational and administrative infrastructure to support clinical research, and special resources such as the Center for Motion Analysis, Department of Research and the Special Kids Support Center. This partnership will permit a unified approach to service provision and evaluation of services to all spina bifida patients receiving care in western and southern New England and eastern New York State.
The specific aims for this proposal are: 1. To submit complete, accurate data for 125 patients yearly for a three year period from the spina bifida clinics of Connecticut Children's Medical Center and Springfield Shriner's Hospital for Children, to the central repository of the Spina Bifida Patient Registry. 2. To submit complete and accurate data in the structured record format of the Spina Bifida National Registry Tool. 3. To collaborate with the U.S. Centers for Disease Control and Prevention, representatives of the Spinal Bifida Association and others to develop and guide analysis and research use of the Registry data. ? ?
The Connecticut Children's Medical Center, a free standing, academic children's hospital and medical center based in Hartford, CT, will collaborate with the Shriner's Hospital for Children of Springfield, MA to enroll spina bifida patients from both institutions in the national Spina Bifida Registry. Dr. Richard Antonelli, MD, nationally recognized expert in quality of care for children with special health care needs will serve as Principal Investigator and join the Centers for Disease Control in a national collaborative to increase the availability of high quality research data to develop national standards for the care of persons with spina bifida. Patients from Connecticut, New York, Massachusetts and other Atlantic states and Puerto Rico will be enrolled in the registry. ? ? ?
