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. Study is completed and final manuscripts are in press.
- 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 for the 10 year follow-up time point continues through 2014 with collaborative MRI data collection.
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". A textbook on treatment of Neuromuscular Scoliosis is now underway by the members of the HSG.
- Surgeon Peer-to-Peer Meetings: The Executive Committee members facilitate 3 surgeon educational meeting per year.
- Patient Education Handbook: In 2012, the HSG produced “Adolescent Idiopathic Scoliosis, Navigating your Journey: A guide for you and your family”. 15,000 copies of the English version and 1000 copies of the Latin Spanish version have been printed. Fundraising for additional language translations and further printing is needed.
- Annual presentations at Scientific meetings and publications in Peer reviewed journals: In 2013, the HSG have produced over 150 peer-reviewed medical journal publications and over 600 presentations at national and international medical conferences.
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: Each year our funds raised increases. The support we receive from industry, colleagues, our surgeon membership and friends of our foundation is extremely appreciated and will help us ensure success in our strategic planning.