The HSG and SSS have three main objectives:
To be internationally recognized for the highest quality published research on new spinal deformity surgery techniques. This is currently being met by conducting four prospective multicenter studies:
Prospective Cerebal Palsy Scoliosis Study: Evaluating the outcomes of spinal fusion surgery in Cerebral Palsy Scoliosis. A cohort of non-operative patients will be followed for comparison purposes. Study launch 2008. Follow-up data collected until 2014.
AIS Database Registry: (Previously the 'Algorithm Study') Comparing all treatment approaches for all Lenke curve types and testing the algorithm for treatment outcomes. This study officially began in January 2003. The database registry enrolls and follows patients at 1, 2, 5, 10, 20, & 25 years post-operatively. A cohort of non-operative patients will be followed if funding permits. This study is on-going.
Scheuermann's Kyphosis Study: Comparing treatment approaches for Scheuermann's Kyphosis. This study officially began in 2006. A cohort of non-operative patients will be followed for comparison purposes. Follow-up data collected until 2013.
Prospective Motion Preservation Evaluation: Evaluating post-operative ROM in the vertebral segments below the fusion. Protocol and data collection procedures were finalizzed in March 2006. Five sites are participating (San Diego, Philadelphia, Delaware, Manhattan and Vancouver). Study enrollment continues through 2012.
To provide patient and surgeon education in spinal deformity diagnoses, treatment and outcomes. This is currently being met by:
Medical Textbook Publication: The surgeon members of the HSG collaborated to produce a 440 page evidence based coverage of the most current evaluation and treatment guidelines for idiopathic scoliosis, published in 2010 (Thieme Publishers, NY): "Idiopathic Scoliosis, The Harms Study Group Treatment Guide". The second edition planning and implementation is underway.
Surgeon Peer-to-Peer Meetings: The Executive Committee members facilitate 3 surgeon educational meeting per year.
Patient Education Handbook: In 2010, v1 of "Adolescent Idiopathic Scoliosis, Navigating your Journey: A guide for you and your family" was created by the membership of the HSG. Patient & surgeon feedback has been incorporated and the creation of v2 is underway. Fundraising for production, translation into 5 languages, and widespread distribution in needed.
Annual presentations at Scientific meetings and publications in Peer reviewed journals: In 2010, the HSG present 28 podium presentations at national and international scientific meetings and published 8 manuscripts in peer-reviewed journals.
To advance the treatment for children and adolescents with spine deformity. This is currently being met by:
Developing new areas of research focus: Such as:
- Implementing Computerized Assessment Technology into Health Related Quality of Life Tools.
- Establishing the utility of 3D reconstruction in treatment planning and outcome evaluations.
- Sagittal plane analysis as primary outcome variable for Adolescent Idiopathic Scoliosis (AIS) surgical outcomes.
- Fusionless strategies and new concepts in fusion surgery for AIS
Fundraising for future research: In 2010 (the first year of fundraising efforts for the foundation) $114,000 was raised to support research.
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